Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: fallen774 on December 31, 2017, 11:31:04 PM
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Hey there,
My surgery is scheduled for April 5th, so I'll update this thread with how it goes. I'm currently 5'6 aiming at 5'9. I research and desire to go under this procedure for more than a decade now. I've told my closest friends and family. It was really hard convincing my folks to accept it. They won't be paying for a thing, I'll pay everything out of my own pocket, but still, they are very conservative people. Besides that, my dad is a radiologist, so bones are kind of his thing and he dedicated almost an entire day on Skype lecturing me about the possible complications.
A little bit about me: I'm a 25yo male engineer in Sillicon Valley. I'm originally from Brazil and moved here about an year ago. I was born with an external rotation on my hips, which basically means that I walk wiggling my butt. It also hurts when I hike or sprint, as I seem to put too much pressure on my shins. Anyhow, I spent an entire life pittying myself for being both short and with funny legs, but the latter turned up being a money saver. I went on my surgeon (Dr. Mahboubian, in North Hollywood) first visit back 3 months ago, and he told me he's able to fix my bone rotation in the same procedure. In other terms, since the surgery now qualifies for an anatomic correction, my health insurance will pay for the hospital fees (which is roughly half the price of the whole thing). Yay.
Now, about why I'm doing this: not for the women, let me make this clear. Most of the posts on this forum are about height insecurities in the sxxual context, which is a pretty plausible reason, but mine isn't that. First, I play for the other team. Second, I feel my height affects my professional context much more. I've felt my entire life that I was not taken very seriously by friends or co-workers, in the sense that I'm often target of jokes, keep being called "half-a-person" and things like that. Just like a transsxxual person looks in the mirror and can't identify with the body they live in, I look in the mirror and never felt happy about the height of my own body. Just the height, nothing more. Maybe that's a thing that psychoanalysts will eventually talk about.
I'm very excited about the upcoming months. I'll take 1 month leave from work. I'll try to use half vacation time and half sick time off. It will also be a correction surgery after all, which is going to improve my overall health and well-being. My co-workers only know about the correction part. They know I feel pain in my legs and my outdoor activity is very limited. They don't know about the other side of the coin and I prefer to maintain like that. There's too much taboo around this procedure and I don't want funny looks. Also, I've been using lifting shoes for the past year, which give me around 6cm. I'll stop using them after the surgery so it becomes almost unnoticeable.
Finally, I decided to not stop my life during the recovery months. I don't know if I'll manage, but I'll keep going to the office. In a wheelchair, of course. My mom will be here with me for 3 months, so she will help me with everyday things.
That's it for today. I'm really excited and will keep you all posted. Hopefully I can help some of you and you can help me back. Talk soon!
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Well, I wish you all the luck. Can I ask you about the risks your father told you about?
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Thanks for taking the time to share with us your story. Shame about your pre-existing problem, but that's great that it's now working in your favor.
LAGrowin will have his procedure in January with Dr. Mahboubian as well. You two are starting 2018 right!
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Thanks for the replies! Most of my dad's concerns are groundless based on his lack of knowledge on this subject. This procedure is not well known in Brazil, even amongst the medical community, and what we end up hearing is that it's a very rudimental thing done in China where they cut your bones with a saw while you're awake. It takes no effort to Google and educate yourself, but guess what, nobody is doing it. So, when I say that I always talked about doing this since I was ~10 years old (always the shortest of the classroom (https://imgur.com/a/IYtuu)), I mean that I was willing to go through this almost-torture thing people mentioned when talking about unconventional methods of growing up. Of course, as I grew older, I educated myself on the actual possibilities. I kept trying to educate my folks for a couple of years but my mom would cry and make drama when I came up with the subject, and my dad would tell me that only over his dead body. That's when I locked myself in my room and started to study 12 hours a day, 7 days a week, for some years, so I could move away and make my own decisions. I was blessed with the opportunity to move to another country and did it, by myself. So I made my own money and called my folks to let them know I'd do the surgery, and that I'd understand if they decided to not speak to me again. I wrote a very long letter explaining all the psychological reasons I needed it, and I had my sister (who is a psychologist) helping me out into making them understand. Honestly, coming out as gay wasn't nearly as hard as convincing them that I needed this to be happy.
So, I managed to make them understand, and got to the stage where my mom said that although she did not accept it, she would respect my decision. They educated themselves on the matter with the numerous articles and videos I sent them, and now they're comfortable with the idea. My dad was worried about osteomyelitis, strength gain pos-surgery (he said I'd have chicken legs) and long-term complications (he wanted me to provide examples of people that went through this surgery and are fine decades later). I never did, as PRECISE 2 is not that old.
Android, I'm very glad to hear that someone else in this forum is doing it with the same doctor in 2018! Hopefully LAGrowin will create a journal. It'll definitely help me a lot. Honestly, I do expect some criticism from folks here since I'm not doing the conventional 3-months sabbatical period away from everything that most people seem to do, so I'd love to hear feedback about that. Taking a 3-months leave from my work is not an option for me, so I'll have to make it work somehow.
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Do you still get comments on being short when you're using the 6cm lifts? If so, damn, people suck.
I wish you the best of luck with your LL.
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Do you still get comments on being short when you're using the 6cm lifts? If so, damn, people suck.
I wish you the best of luck with your LL.
With the lifts I get to be average on Brazil, and a little below average in the US (172cm, almost 5'8 ). With the surgery, I plan to be 5'9, and I get to be 5'11 whenever I'm feeling like it (heck, lifting shoes are a bless), but on my day-to-day life I'll not use the lifts as I do now.
And no, I don't get nearly as many comments as I did before, but I still do. Yesterday I was hanging out with this guy and when we said good bye, he said "God, you have such tiny legs, you look so small", to which I responded "but we are the same height..." (we were, with my lifts), and he replied "yeah, but it's just my impression". So yeah, I think that although the lifts make me taller, my legs still look small to other people. I have no way of knowing, as it's really hard to analyze myself.
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I see. Thanks for the reply.
It's sad that we live in such a world where people will discriminate and say things like that to your face. However, this will be your last year facing anything like that. Awesome job working yourself to that spot in life. I hope you manage to get everything that you wanted to get out of LL.
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Hey there,
My surgery is scheduled for April 5th, so I'll update this thread with how it goes. I'm currently 5'6 aiming at 5'9. I research and desire to go under this procedure for more than a decade now. I've told my closest friends and family. It was really hard convincing my folks to accept it. They won't be paying for a thing, I'll pay everything out of my own pocket, but still, they are very conservative people. Besides that, my dad is a radiologist, so bones are kind of his thing and he dedicated almost an entire day on Skype lecturing me about the possible complications.
A little bit about me: I'm a 25yo male engineer in Sillicon Valley. I'm originally from Brazil and moved here about an year ago. I was born with an external rotation on my hips, which basically means that I walk wiggling my butt. It also hurts when I hike or sprint, as I seem to put too much pressure on my shins. Anyhow, I spent an entire life pittying myself for being both short and with funny legs, but the latter turned up being a money saver. I went on my surgeon (Dr. Mahboubian, in North Hollywood) first visit back 3 months ago, and he told me he's able to fix my bone rotation in the same procedure. In other terms, since the surgery now qualifies for an anatomic correction, my health insurance will pay for the hospital fees (which is roughly half the price of the whole thing). Yay.
Now, about why I'm doing this: not for the women, let me make this clear. Most of the posts on this forum are about height insecurities in the sxxual context, which is a pretty plausible reason, but mine isn't that. First, I play for the other team. Second, I feel my height affects my professional context much more. I've felt my entire life that I was not taken very seriously by friends or co-workers, in the sense that I'm often target of jokes, keep being called "half-a-person" and things like that. Just like a transsxxual person looks in the mirror and can't identify with the body they live in, I look in the mirror and never felt happy about the height of my own body. Just the height, nothing more. Maybe that's a thing that psychoanalysts will eventually talk about.
I'm very excited about the upcoming months. I'll take 1 month leave from work. I'll try to use half vacation time and half sick time off. It will also be a correction surgery after all, which is going to improve my overall health and well-being. My co-workers only know about the correction part. They know I feel pain in my legs and my outdoor activity is very limited. They don't know about the other side of the coin and I prefer to maintain like that. There's too much taboo around this procedure and I don't want funny looks. Also, I've been using lifting shoes for the past year, which give me around 6cm. I'll stop using them after the surgery so it becomes almost unnoticeable.
Finally, I decided to not stop my life during the recovery months. I don't know if I'll manage, but I'll keep going to the office. In a wheelchair, of course. My mom will be here with me for 3 months, so she will help me with everyday things.
That's it for today. I'm really excited and will keep you all posted. Hopefully I can help some of you and you can help me back. Talk soon!
great, all the best. I have 2 questions - may I PM you?
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looking forward to this diary.
I Am still considering Mahboubian for external tibias with TSF frame (live in cali) so can't wait for you to tell us about your hopefully good experience :)
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Thanks for taking the time to share with us your story. Shame about your pre-existing problem, but that's great that it's now working in your favor.
LAGrowin will have his procedure in January with Dr. Mahboubian as well. You two are starting 2018 right!
Fallen774,
Thank you for sharing with us. Happy to hear of another Dr. Mahboubian patient.
As Android mentioned above, I am a few months ahead of you, and about 2 weeks away from surgery with Dr. Mahboubian. Getting nervous, but excited. I'm in my 40s, feel in my 30's and share in your height stats. 5'6" and hoping for 8CM to 5'9".
Wishing you the best!
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great, all the best. I have 2 questions - may I PM you?
Sure!
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Sure!
thanks bro, sent.
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Hey all,
The day has finally arrived. I did my surgery 4 days ago, so here's a summary of how my days have been (I'll split it in several posts):
DAY 1
I slept very little on the night before the surgery. Woke up at 3AM and couldn't sleep again out of overthinking. Was this the right decision, or did I get here due to my impulsiveness? I didn't know. I was mostly apathetic and couldn't feel fear nor joy. I wasn't anxious neither. All I could think of is that I had too show up at the hospital by 5:30AM and I was going to be bored for the next 2 hours.
Took a shower, dressed up, left my room and saw that my parents were getting ready as well. Called Uber and by 5:20AM I was at the hospital, looking for the right place to check in. Found it, gave them my name and waited for about 15 mins. First step was just giving basic information and signing a bunch of paperwork related to my rights, my insurance and some other bureaucratic stuff.
I was directed to the short stay nursing area. Went there and checked in again, they put a hospital wristband with my name on me, and led me to a private room. I was repeatedly asked the same questions about drugs I was current using, DoB, last name, etc (you really can't mess this up). I was then asked to change my clothes into a hospital apron and was given a last chance to pee.
The anesthesiologist shortly came into my room and asked some of the same questions again, then briefly told me what he was going to do and said that he would see me in the operating room. Then Dr. M arrived, asked if I was excited and met my parents (they're temporarily visiting from another country to support me through the process). Then, a very friendly guy came into the room to shave my upper legs, wished me good luck and I was finally taken to the operating room. My parents were left in a waiting area somewhere in the way.
The operating room was quite big and there were quite a few people in there. I didn't count but I would say that definitely more than 6. They were all very friendly and started asking questions about where I come from, what do I do, etc. It was around 7:45AM when the doc came into the operating room. A lady was holding some paperwork and read it out loud my name and the reason that at I was there – "bilateral femur osteoplasty with femoral derotation". Everyone nodded. That's the furthest I can remember. I don't remember going to sleep, or even closing my eyes. The next thing I know is consciously opening my eyes and having some folks moving my legs in many different positions. As far as I recall, it was around 1PM. They were taking my X-Rays. I remember babbling about pain on my legs and telling them that it was hurting me. Not a 10 but maybe a 6. I was very confused. The nurse came and put some pain killers on my IV. I was then told that I was under PCA and was given a black device with a button. Whenever I pushed it, 1mg of morphine would flow to my bloodstream, but I could only do it once every 10 mins. After they finished taking my X-Rays, I was taken to my room. They called my parents to say that the surgery was over and I was conscious in my room. I was conscious but a little bit confused. It took a while to notice I had a catheter on me and to remember exactly what I was doing there. It didn't last long, though. The nurses came in and introduced themselves, took some vitals, asked if I was doing OK. I was constantly under morphine so the hard pain didn't really hit me. Throw a rock on me now but when I heard that I could only use it every 10 minutes, somehow my brain interpreted it as "DO use it every 10 minutes". Consequences would come up later.
It wasn't long till Dr. M came check on me. He told me that everything went fine and that he used the thickest nails. He asked if I noticed how my feet were better aligned now, which was something I totally forgot to do. I urged to take out the sheets and take a look at my own legs. Despite being full of large gauze pads all over my thighs and glutes, I was amazed to see how my knees better aligned with my feet now. I felt so happy. I'm not so good at expressing emotions tho, so I'm sure I had a "meh" face – but I made sure to tell him I was very satisfied with the results. Then, he displayed my X-Rays on a screen by my side and called my dad (who is a radiologist) to see it. He explained again what he did, reassured that everything went well and asked me to rest. Before he left, he said he was going to pay me visit the next morning.
The rest of the day was full of hospital staff coming into the room to check on me. I was given water and some soap, which I ate entirely in no time since I had been fasting for the past 14 hours. Later in the afternoon, PT came into the room to check on me. He asked if I could feel my feet, which I could. Then he asked me to move my feet and my fingers, which I also did. Then, some exercises to lift my legs, move it sideways, bend my knees... and then I noticed I couldn't bend it past 90°. Maybe due to the muscle incisions and trauma of the surgery itself. I heard it was expected. My range of motion was quite limited but I was happy to be able to do it all. He then showed me a walker and asked me to stand up on a scale, holding the walker. I took a few minutes but I did it. Not much pain, mostly muscle discomfort – my legs felt VERY tight. He asked if I could walk. I was going to do that, when I felt a sudden dizziness, like I was gonna vomit. I told him about that and he said it was ok to continue the next day. I felt bad for not doing the entire session but knew that this was the right thing to do. They gave me some vomit bags, I laid down again but nothing ended happening, it was just a temporary sickness.
TV didn't have many options, and honestly I was too high and confused from all the medication – and the morphine, since I was pressing the button every 10 minutes. I enjoy privacy and personal space a lot, mainly during stressing times, but despite me asking my parents several times for them to sleep at our Airbnb and come to the hospital early in the morning, they ended up deciding to stay. I think it was good after all, since I'd struggle a lot that night. Continues on day 2.
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Great start Fallen! That's funny about the morphine drip, good thing there's a limiter; God forbid you hear something like "press it 10 times per minute."
And like you first shared, your hip rotation was indeed a blessing in disguise. Glad to hear that you're getting that fixed too, with the insurance savings to boot.
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Very happy your journey is of to a good start Fallen. Hope we get to meet up with the other guys soon and share stories. I wish you the very best.
Keep us posted.
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Hey buddy, I didn't notice your diary until just now. Glad your surgery went well. That's really lucky that you were able to correct your rotation AND that it enabled you to get insurance coverage for the hospital fee! Anyway, I hope we all get to meet up next week!
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Sorry for the long time to update. Lots of things happened last week.
DAY 2
I forgot to mention that around 10PM on day 1, a nurse came to take my catheter out. I asked her to do it slowly, since others reported in this forum that sometimes it is pretty painful. She kind of ignored and pulled it out in about 3 seconds. No pain, just a weird sensation.
I couldn't sleep, even with so much morphine on my system. As a matter of fact, because of the excess in morphine I started having an allergic reaction. At 1AM my whole body was extremely itchy. Due to my limits in motion, I couldn't reach some spots such as my feet or my lower legs, nor the spots under the dressings, which made the night horrible.
I asked the nurse to put some Benadryl on my IV, but it didn't seem to help. During the night my pain increased and the nurse increased the morphine dosage from 1mg to 1.5mg, and then from 1.5mg to 2mg. That was every 10 minutes.
As my body was getting overwhelmed with so much morphine, my itchiness only increased. That's when my mom suggested that maybe the morphine was causing a reaction on my body. I called in the nurse and asked if this was possible, to which she confirmed. I started using it less and less and eventually the itchiness subsided.
Dr M paid me a visit early in the morning to check how was everything. He answered some questions I had and told me that the first few days would be tough.
The rest of the day went quite well. I had breakfast and lunch on the hospital, was able to pee – actually, I was peeing every hour or so – and eat with no major issues.
The nurses came in every hour to check my vitals. Eventually I got a visit from the PT to try and get me moving. I was able to walk up til the corridor and back, with the walker. I was able to stand for more than 10 minutes before I urged to go back to bed. The PT told me I did great for only my second day after this major surgery.
I was then told I was being released today. I actually got excited since I don't like hospitals that much. I received a visit from the case manager and she told me she was able to get me a commode and a walker through my insurance. Yay!
I left the hospital by 4PM. The hospital arranged a transportation van for me, which means I didn't have to leave the wheelchair. But my wheelchair hadn't arrived from Amazon at that time, so I used one from the hospital. They led me into the van and I went up in a mini-elevator. Ride home was quite smooth. When I got there, the driver rolled me into my apartment and then into my bed, so he could return the chair.
I got a notification from Amazon saying that they tried delivering the wheelchair but failed. I had my parents running to the closest USPS at 5PM to try and get it. Lucky for me, the wheelchair was there and they were able to retrieve it.
By 10PM everybody was pretty much tired. I went to bed after taking a Norco, but woke up a few times during the night. Thought was going to be a nightmare sleeping with the belly up but Norco is quite a saver.
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DAYS 3-4
The weekend was quite good. I was recovering fantastically well and using the walker quite often. Maybe that was my mistake. I had lots of energy and was trying to do a bunch of things by myself. Not much pain, maybe the anesthesia hadn't wore off. I was able to stay in the wheelchair and use the PC for hours without feeling any discomfort. Sleeping was the worst part, so I always relied on Norco to help.
I wasn't able to do any bowel movement so far, so by Sunday it had been 5 days without a bowel. That got me worried, but I received a visit from home care nurse on that same day. She changed my dressings and recommended me to take a suppository, just for the first week. Norco slows down your intestines and to much of it can shut down your digestive system. I took a suppository on Sunday night and was able to have my first BM pos-op.
My range of motion on both legs was about 90° bending. My right leg was a little bit more swollen than the left one but not much significantly, so I was calm. Took a Norco and went to bed.
Btw, so far I was on about 6 pills of Norco a day.
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How my legs looked right after operation:
(https://i.imgur.com/BUnUY1S.jpg)
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HI friend
i come from Taiwan
hope you have happy ending
by the way
USA health insurance would cover you ??
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DAY 5
This is the day that my life started becoming a nightmare. Everything was good during the morning. Woke up, took my Xarelto, Vitamin D and Calcium. Spent a little bit of the morning time in bed, and then moved up to the wheelchair. So far, staying in bed was the worst. Keeping my legs 180° caused lots of pressure on my knees, front and back. I think the pain in the back of the knees was related to the very big bruising I had (will upload an image soon).
By afternoon, I was sitting in the living room when I started feeling a discomfort on my right buttock. It felt as if I could feel the screw touching my butt. I sent an email to the doc and he promptly responded telling me to apply ice packs on the area, as it might've been a little bit more inflamed. I did and it helped for a while.
The real struggle started during the night. Around 8PM I started feeling a slightly sharp pain on my right leg. I could sense there was a specific spot; if I touched it, my body would shake in pain. Heard they call it a tender point.
The pain only intensified as the hours passed. Norco only lasts about 1h on my system, so I couldn't rely on that. Around 11PM, the pain was such that I was sweating and shaking. I took my temperature and it showed 101.6° F, which is considered fever. I read the manual I was given after being discharged from the hospital to try and find what to do. Ended up reading about something called 'compartment syndrome'. There were about 10 items in the symptoms list and it recommended going to the ER if you experienced at least one of them. I was experiencing 7. So, right before midnight, I was calling Uber to go to the ER with my folks.
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I hope you are doing well. Glad you decided to get checked out. Compartment syndrome is rare with femoral surgeries. Please tell us how things ended up.
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Wow, sorry to hear that this happened. I'm guessing you're better now since you're writing about this after the fact, hope that it went smoothly.
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could be fat embolism syndrome.
that usually starts with a fever. hope everything is well
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DAY 6
Getting to the ER was a little bit complicated, mainly because by the time the Uber was at my place, the slightest movement on my right leg would make me want to die. The pain was really intense, easily 10/10. I tried getting accessible vans with elevator for wheelchair patients but at midnight it was really an impossible task. I was really desperate to get to the hospital so I would beg the Uber driver to take me if he denied it because of my condition.
Fortunately, he didn't. I was able to lean on the door with one hand and on the seat with the other hand, and pulled myself up. Pain was intense but my desire to get to the ER was bigger. I had to sit diagonally, with the healthy leg touching the ground and the other one resting on the seat.
When I got to the ER, I got even more desperate. So many people in the waiting room. I checked-in and told them I had done a surgery at that same hospital about 5 days back. After a few minutes waiting, they called me to triage, and then was sent to do some blood tests and chest X-Ray -- they wanted to make sure I didn't have pneumonia (???). I was then told to wait about 45 minutes for the results to come out.
I waited about 10 minutes in the living room when the pain got really unbearable. I thought I was going to faint. My leg was hard as rock, I was sweating a lot and had a hard time breathing. That might've been the anxiety kicking in but I decided to call Dr. M. I found out he has someone available 24/7 to call him in case of emergencies. I called and told that I was in the ER, and desperately needed to talk to him. They told me that I should have someone in the ER calling them instead.
When I hung up the phone, I completely freaked out. I knew I would wait a lot and the thought of losing my leg to compartment syndrome just kicked in so bad that I completely lost any shyness or insecurity that I usually have. I rolled myself into the triage room again and asked to talk to the same person that first saw me. I begged her to please call my doctor's office to tell him that I was there and that I might've had compartment syndrome. It was just a guess based on a bunch of common symptoms in a manual I was given by the hospital itself upon checking out, but it was definitely worth checking. She saw how nerve wreck I was and called someone to check up on me instantly. They put me in a bed and asked to see my legs (I had some long pants on). As soon as they saw how bad it was, I was immediately sent to a private room to be seen by a doctor. They first put me on IV to give me some pain killers. I honestly tried taking Norco but it simply didn't work.
The night was endless. I did several exams (blood tests, urine tests, X-Ray, Ultrassom) to try to get an idea of what exactly was happening. I was ok after the painkillers kicked in through the IV, so the pain was manageable, but I was still really nervous about the possibility of needing another surgery. This is a completely unknown territory for most of us, because even though we spend hours and hours on this forum reading diaries and other patient's experiences, everyone of us may go through some unpredictable things.
It was around 7AM when my results came out. And guess what... nothing. Precise nail was fine, no blood clots, no infection and no compartment syndrome. All major concerns were ruled out, which left only one explanation: some blood vessel was leaking and caused a major internal bleeding. Just so you have an idea, I measured the diameter of my left leg at some point above my knees and it was 38cm. On that same spot in the right leg it was more than 45cm.
By the time I was discharged from the hospital, I still couldn't move my right leg anymore. Copy-paste the same history about how hard it was getting an Uber back home, and then by 8AM I was back in my bed. The rest of the day was just shoving down Norco every 4 hours and ice packing my leg. Part of me was relieved that it wasn't anything that would require intervention, but part of me was mad for putting myself through this. For not overthinking things that could go wrong. For underestimating the whole process. In a matter of hours I had my right leg outgrow my left one by lots of cms and I would just think how fked up this is. It was the first time in my life going through something so major in my own body, and it was definitely the most intense pain I've ever felt. During the entire day I felt the urge to call the doctor's office but I knew it wasn't going to change a thing. I knew I just had to fight the pain and my body would eventually heal.
And so I did. I spent the entire day in bed. It was a Tuesday, and my follow-up with Dr. M was on a Friday. By Friday, I had to be healthy enough to start the whole lengthening process. It was going to be some tough days -- the toughest ones in my life, I would argue.
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No fking way dude, I was diagnosed with the pelvic tilt back in highschool now you're telling me that hospital fees can be covered by insurance?! If this isn't a sign then I don't know what is...good luck on your recovery my friend.
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Damn reading this is pretty discouraging, you can get through it man! also, I am noticing that most cases of extreme pain seem to be with femurs. anyone else?
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Damn reading this is pretty discouraging, you can get through it man! also, I am noticing that most cases of extreme pain seem to be with femurs. anyone else?
Well, at least recently, the people describing pain levels of 7~10/10 have all been femur patients. That's my impression too, at least.
Fallen: I'm very glad it was nothing major. Good job being a warrior through that 10/10 pain, the Uber cabs, and the ER visit. A lot of the people here doing internal femurs hired caretakers. Did you consider doing that too? Or are your parents going to be with you for the whole process? EDIT: I read this in the OP again, but I'm going to keep my post as it was: "My mom will be here with me for 3 months, so she will help me with everyday things."
I hope you can remain strong until Friday. Don't be afraid of reaching out to your doctor by mail or phone even for trivial things. This is a ridiculously invasive and expensive surgery.
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What a twist!
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So were you able to get in touch with Dr. M to let him know about your issue? It seems like something the emergency physician should have called Dr. M about for further guidance/consultation, especially if you have an obvious thigh size discrepancy, decreased leg function, and possible occult bleeding. I'm sure Dr. M wouldn't mind you coming in earlier to the clinic the next day for outpatient assessment.
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Sorry for the disappearance guys. I'm on my 37th day post-op now and let me tell you: things WILL get better. Trust me. No amount of diaries reading would make me believe it until I actually went through it. The first 3 weeks are tough. Don't get overconfident and try doing things by yourself on the first few days, you will definitely need help, and you must give your body time to heal. Do PT, but take it easy on the beginning. Your legs went through a HUGE trauma and they will heal, just don't push it too hard.
My initial idea is that I'd be able to update this thread every day. Now, I see that's highly unlikely. The downsides of this surgery are not only physical but also psychological. I had 0 energy or motivation to do things. Sometimes I'd catch myself just staring at the wall and waiting for time to pass. Yes, it varies from person to person, but I really got into this emotional limbo. I would even get lazy about turning on the TV. I just didn't want to do anything.
The reason I'm conjugating those verbs in the past is that I honestly believe I'm on a better path now. After staying in LA for almost 6 weeks, I'm going back to the Bay Area tomorrow. I'm really excited about going back to work and I think it'll keep my mind busy. I miss doing things and going out and seeing my friends and although I'm still bounded to a wheelchair/walker, going to my workplace is something I'm really looking forward to.
Now, if you read my previous posts, you remember the drama I had with ER. Looking backwards, I can honestly say that that was one of the major obstacles of this process. The pain level was definitely high and I did have my right leg swollen for weeks after that. My range of motion on the right leg was really poor compared to the left one and I was pessimist to think that I wouldn't gain it back. Just to give you an idea of how messed up my right leg was, look at these pictures: https://imgur.com/a/NhMKBpf (https://imgur.com/a/NhMKBpf). Needless to say that now, both my legs are the same.
Regarding the femur rotation that I also did, here's a before/after pictures of how my legs used to be when rested and how they are now: https://imgur.com/a/6gTZrw7 (https://imgur.com/a/6gTZrw7). I'm really happy with the results :)
My lengthening started on April 14th and I lengthened 4 times a day for the first 5 days, and then went to 3 times a day. My second appointment with Dr. M was on April 27th, and by then I had lengthened 1.6cm. He told me to keep the pace of 3 times a day. Back then, I wasn't relying much on the walker and wasn't taking any sunbath -- but on the other hand, I was doing PT every single day. After that appointment I decided to mostly walk and take at least 1 hour of sunbath every day. That seemed to work, as I had my third appointment earlier today and my bone growth is really good -- https://imgur.com/a/txNa99D (https://imgur.com/a/txNa99D). So good that he asked me to go 4 times a day for 14 days, and come back to see him. He is really worried that I might have premature consolidation, so we'll see how things go from here. I decided that instead of mailing him the X-Rays, I'll catch a flight once every 2 or 3 weeks. The Bay Area is pretty close to Los Angeles and the flight is no longer than 1 hour.
I'm at 3cm as of today and my mobility is really good, I'm able to walk fast with the walker and actually got a compliment from the PT. He said that he was really impressed by the way I was walking at this point, which made me pretty happy :-)
I'm taking Vitamin D and Os-Cal 2 times a day, and Norco as needed -- as few as possible. I stopped taking Norco before the PT and I'm mostly using it before bedtime. I'm starting to feel tight on my hamstrings, on my abductors and a little bit of pain on my right knee, but I'm stretching a lot and doing as much PT as possible. Massage also helps a lot with the tightness. I'm already able to sleep with my belly down without any pain (which I really had on the first few weeks), which is the only way I can properly sleep, but it only lasts for 2-3 hours. I always wake in the middle of the night with my legs feeling really tight, and then I force myself back to sleep. I'm taking Ambien to aid me with that and let me tell you, it REALLY works. Try asking your doctor to prescribe you that if you have trouble sleeping.
Finally, here's a spreadsheet that I'm organizing with all the days, the expected gains and the real gains -- https://imgur.com/a/poZXJW4 (https://imgur.com/a/poZXJW4). Any feedback on how to improve it would be really helpful. So far all the measures from the X-Rays are matching the expected gains and my real height I'm measuring once every few days also matches it. I plan on going up to 7cm (yes, the title of this thread was made by the pre-op naïve me), but if I get there and I see I can do more, I'll do it. If I see I'm not able to get up to 7cm, I'll stop earlier. That all depends on how my next weeks will go.
Btw, I'm using this stadiometer to measure my height and it's really good: https://www.amazon.com/gp/product/B01B68C638/ (https://www.amazon.com/gp/product/B01B68C638/).
That's all for today folks, feel free to ask me any questions and I'll try to be more active here going forward!
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Glad to hear that things have calmed down for you, fallen. Good thing you're relatively close to your doctor, definitely a short flight; being in the same time zone even helps.
Great news that both legs are acting fine now. Amazing how a few weeks can turn things around, body and mind!
Can't really think of improvements for the progress spreadsheet, except perhaps having a few visual milestones to keep you motivated. Every X days, every X cm, or a visually pleasing number (e.g. 170 cm) would work.
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Very inspiring, thanks for your time. I wish you a good recovery.. Has your fathers opinion on the procedure changed much?
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That's all for today folks, feel free to ask me any questions and I'll try to be more active here going forward!
Can you describe it in a little more detail how sleeping was this time around, and how did it compare to the other previous instances you had more trouble with it? What difference Ambien made too?
Also if your sleep has followed a certain pattern of difficulty, or if it felt more like ups and downs so far, in your opinion.
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Can you describe it in a little more detail how sleeping was this time around, and how did it compare to the other previous instances you had more trouble with it? What difference Ambien made too?
Also if your sleep has followed a certain pattern of difficulty, or if it felt more like ups and downs so far, in your opinion.
I've always had insomnia, even before the surgery, mainly during times when I was stressed out. My poor sleep after the surgery was not only attributed to the pain level but also to my mind not being able to shut down, due to the stress that comes with this process.
The difference from my sleep before and after surgery is simply that before, it would be difficult to shut down my mind due to overthinking about random things and getting anxious about the next day. After the surgery, it would be difficult to shut down my mind due to overthinking about the pain/discomfort that I was feeling and getting anxious about the consequences of my surgery.
Ambien works the same in all the instances. Half an hour after taking it, your mind slowly begins to fade away. Thoughts get more "soft", make way less sense, as if you were dreaming awake. The more you force yourself to stay awake, the less things will make sense. And then when you finally put your head on the pillow and shut your eyes, sleeping is fairly easy. It comes in seconds.
Last night was definitely the best night ever, I was able to sleep for 6 hours straight, without waking up. Usually Ambien lasts 3 hours on my body, so I guess I'm just getting used to this.
Sleep is really tough during the first 3 weeks. Be ready. At least for me, it was really hard staying in the same position for more than 2 hours. Things will get easier with time. Just have patience and endurance and everything will work out and will be worth it in the end.
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Very inspiring, thanks for your time. I wish you a good recovery.. Has your fathers opinion on the procedure changed much?
Yes, he's changed a lot. He met Dr. Mahboubian and was impressed by the whole medical infrastructure around this surgery. He has a friend that really hates being short and when he got back to Brazil after helping me here for 3 weeks, he told his friend about this procedure. I think he's becoming an advocate for it now, but he still asks me to stop on +-5cm, just to be safe. My mom, on the other hand, is still here helping me physically and is the one motivating me to keep going. She really wants me to achieve my goal :-)
In the end, I'll stop whenever one of the following happens: the pain is simply unbearable OR I'm getting disproportional OR I've reached the technical maximum of 8cm.
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Glad to hear that things have calmed down for you, fallen. Good thing you're relatively close to your doctor, definitely a short flight; being in the same time zone even helps.
Great news that both legs are acting fine now. Amazing how a few weeks can turn things around, body and mind!
Can't really think of improvements for the progress spreadsheet, except perhaps having a few visual milestones to keep you motivated. Every X days, every X cm, or a visually pleasing number (e.g. 170 cm) would work.
Thanks, that's a really nice idea! I'll include it in the spreadsheet :)
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Yes, he's changed a lot. He met Dr. Mahboubian and was impressed by the whole medical infrastructure around this surgery. He has a friend that really hates being short and when he got back to Brazil after helping me here for 3 weeks, he told his friend about this procedure. I think he's becoming an advocate for it now, but he still asks me to stop on +-5cm, just to be safe. My mom, on the other hand, is still here helping me physically and is the one motivating me to keep going. She really wants me to achieve my goal :-)
In the end, I'll stop whenever one of the following happens: the pain is simply unbearable OR I'm getting disproportional OR I've reached the technical maximum of 8cm.
Such a pragmatic approach.
Stay positive, I feel you'll nail it - wherever your goal ends up at!
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I am noticing that most cases of extreme pain seem to be with femurs. anyone else?
Same here, while doing quadrilateral. Femur pain has been worse 90% of the time, except of course in the three weeks from the tibias surgery to the femurs surgery when there was no femur pain.
The worst pain I've ever felt was also after the femurs surgery, when I was crying in pain, holding the nurse's hand, waiting for morphine to kick in (it didn't really work; Dilaudid did).
My initial idea is that I'd be able to update this thread every day. Now, I see that's highly unlikely. The downsides of this surgery are not only physical but also psychological. I had 0 energy or motivation to do things. Sometimes I'd catch myself just staring at the wall and waiting for time to pass. Yes, it varies from person to person, but I really got into this emotional limbo. I would even get lazy about turning on the TV. I just didn't want to do anything.
I felt exactly the same lack of motivation since after the first surgery. While before the surgery I'd be on my laptop 10+ hours a day, now days would pass without even opening its lid. No interest in checking the news, my portfolio, email or anything really. Fellow Paley patient Purushrottam reported (http://www.limblengtheningforum.com/index.php?topic=4823.msg84072#msg84072) more or less the same:
I actually didn't write that often when I was actually lengthening. The lack of sleep totally depresses you. You don't feel motivated to do anything... even physical therapy. You have to push thru. Its not really a physical thing. The majority of the process is mental (fighting your mental inerti[a]).
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Same here, while doing quadrilateral. Femur pain has been worse 90% of the time, except of course in the three weeks from the tibias surgery to the femurs surgery when there was no femur pain.
The worst pain I've ever felt was also after the femurs surgery, when I was crying in pain, holding the nurse's hand, waiting for morphine to kick in (it didn't really work; Dilaudid did).
I felt exactly the same lack of motivation since after the first surgery. While before the surgery I'd be on my laptop 10+ hours a day, now days would pass without even opening its lid. No interest in checking the news, my portfolio, email or anything really. Fellow Paley patient Purushrottam reported (http://www.limblengtheningforum.com/index.php?topic=4823.msg84072#msg84072) more or less the same:
Wow, I didn’t know that there was such a significant difference. Did you have major pain spikes for the tibias or was it mainly continuous pain? If you could only choose to lengthen one or the other would you choose tibias due to the less pain (even if it meant lengthening less for tibias)? Thanks by the way, your input has been incredibly helpful.
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Definitely a pattern, I remember reading this from badwolf's diary (http://www.limblengtheningforum.com/index.php?topic=2672.msg41963#msg41963):
Dr. Kulesh has told me with amusement on several occasions that most patients come for lengthening making bold claims about all the productive things they'll do during the lengthening/consolidation process and always end up just becoming couch potatoes, watching TV, and browsing the internet.
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Wow, I didn’t know that there was such a significant difference. Did you have major pain spikes for the tibias or was it mainly continuous pain? If you could only choose to lengthen one or the other would you choose tibias due to the less pain (even if it meant lengthening less for tibias)? Thanks by the way, your input has been incredibly helpful.
Actually, it turns out I might have under-remembered my pain during the first two weeks post tibia. (The brain has a tendency to do that.) My girlfriend said I was in terrible pain every day after tibias, for the first 2.5 weeks. The pain was rather continuous, and worse at night. I would toss and turn, unable to sleep. During week 3 though I was able to sleep for up to 5 hours.
If I could lengthen only one segment, I would choose the femurs but with STRYDE. Only with STRYDE. It's a game changer that I missed by a month or two.
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Hi. Can you tell me what you budgeted? What Is the cost of surgery? Insurance pay for meds? Other costs like do you need a helper ? Staying at home or elsewhere?
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Hey guys,
It has been almost a month since my last update. Lots of health problems happened but I won't disclosure it here since it was caused by a mistake that I made, and it's irrelevant to the LL procedure.
I'm 14 days away from reaching the max of 8cm. I had nerve damage on my lower left leg and now I can't feel my left shin skin area anymore. I'm going to start on Gabapentin this week to help with occasional nerve pain and tingling.
My bones were consolidating quite fast and Dr. Mahboubian saw my last set of X-Rays and called me to say that he thinks I consolidated, but he proposed that I did 4 times a day for 1 week and notice any increased tightness. I'm also using a stadiometer. After 4 days, I can already feel the difference both in terms of tightness and height increase, so my bones haven't consolidated and I'll keep on doing it.
My legs are tight but I'm still able to straighten them. Does anyone know the point at which most people can't straighten them anymore? Hopefully I won't experience this.
As soon as I stop the procedure I'll share the spreadsheet with my daily metrics. You'll notice that there are two gaps in which I didn't do it for 3 days, and that was because of the medical problem I had, but again, unrelated to the surgery.
Can anyone link me to some X-Rays image of the bones fully consolidated, and also the bones after the rod removal?
Thank you! Feel free to ask any questions.
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Hi. Can you tell me what you budgeted? What Is the cost of surgery? Insurance pay for meds? Other costs like do you need a helper ? Staying at home or elsewhere?
Just sent you a PM answering these questions. I don't see people commenting about prices in public so I'm just following the pattern :P
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I'm 14 days away from reaching the max of 8cm. I had nerve damage on my lower left leg and now I can't feel my left shin skin area anymore. I'm going to start on Gabapentin this week to help with occasional nerve pain and tingling.
That's great and fast progress, congrats! I also can't feel really left shin skin area. Dr. Paley said it might surprisingly be caused by Xarelto, and I could switch to aspirin if it bothered me (it doesn't that much yet). Starting Gabapentin now seems a bit strange. I've started to taper it down as soon as I stopped lengthening 5 days ago.
My legs are tight but I'm still able to straighten them. Does anyone know the point at which most people can't straighten them anymore? Hopefully I won't experience this.
It's great that you're still able to straighten the knees at almost 8cm of extra length. Did you do anything special to achieve this, such as wearing knee braces?
Optimistic1 can no longer straighten his, but he did quadrilateral.
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That's great and fast progress, congrats! I also can't feel really left shin skin area. Dr. Paley said it might surprisingly be caused by Xarelto, and I could switch to aspirin if it bothered me (it doesn't that much yet). Starting Gabapentin now seems a bit strange. I've started to taper it down as soon as I stopped lengthening 5 days ago.
It's great that you're still able to straighten the knees at almost 8cm of extra length. Did you do anything special to achieve this, such as wearing knee braces?
Optimistic1 can no longer straighten his, but he did quadrilateral.
I'd be so happy if it was because of the Xarelto, but Dr. M only prescribes it for 21 days and I was off it when the numbness started. Why is starting Gabapentin now weird? Did you have nerve pains before, when you started taking them? During my first ~4cm it was mostly muscle/bone pain, but after that I started feeling lots of tingling and burning on my left leg. That's why I'm starting it late, and hopefully it will make a difference. Do you know if the effect is immediate or you have to wait a few days/weeks?
As to straightening my legs, I don't know if I'm doing anything special, but I can tell how my days look like. I've been avoiding the wheelchair since 3 weeks after the surgery and I use the walker for mostly everything. I stand up every 40 minutes and walk a little bit. I do an easy exercise lots of times per day in which I hold on to the walker with both hands, I straighten one leg back and I keep the other leg bent. Don't know if you can visualize it but I'll try to find a picture of this movement. I've also been doing PT 5 times per week (sometimes 6, on a Saturday). Yeah, I think that's it. I'm sorry to hear Optimistic1 can't straighten is legs, but he will be able to, right? The way I read it, it seemed that you meant that he would no longer be able to straighten it forever. Hopefully I got this wrong.
How have you been feeling by the way? Let's catch up soon!
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Alright guys, I thought it thoroughly and I think it's ok for me to disclosure what happened, and it hopefully will help someone to not do the same.
On May 14th, Monday, I went back to work. I thought I was prepared for the social anxiety, for dealing with people looking at me, but I actually wasn't. I wasn't much productive on my first few days back at work, but my whole team (which is essentially a suborganization within a company in the software engineering world) was extremely supportive. The FMLA could give me a medical leave of up to 16 weeks, but it was a personal decision to take 6 weeks. Actually, the initial idea was to take only 2 weeks of leave, work 2 weeks from home and then go back to work. But if you guys read my posts, you know that there were a couple complications along the way. My plan to go back to the Bay Area by the end of April went downhill when I realized my right leg was still in a lot of pain and swollen, and I felt safer being closer to the doctor.
Although some days I'd wake up in a better mood, I tried to get work done but I guess my seratonin levels were very low. The first month of the surgery just drains your whole energy. Or, at least, it drained mine. So, I went back to work and I couldn't produce much, but I felt VERY guilty that an elective surgery would impact my performance. I felt bad for being unproductive to my team and to my coworkers. I know it was all in my head. I talked to my manager and she was extremely complacent with the situation. They would even tell me that I could work from home a couple of days in the week. But despite all this, I still felt guilty. So what I did? I scheduled an appointment with a psychiatrist and got ADHD medication. Those pills are used by teenagers and adults with ADHD and I felt I could benefit from that since my attention span was f*cked up after 1 month and a half away. Not only that, I also got prescribed Xanax (Alprazolam), as a short-term solution for my anxiety. Apart from that, I was also taking opioids. If you know something about psychotropic medications interaction, you can already guess the sh*t I've done.
Let's go: my productivity became GREAT. I was able to focus and code and give insights on meetings. I felt like super-man during the day, lol. So by Friday, May 25th, I was completing 2 weeks back to work and I was feeling great. My nerve pains (which I've been having since the beginning of May) were unnoticeable. I couldn't stop talking. I felt happy about the smallest things. But none of this was natural. I was actually completely disturbed and couldn't even notice. By Sunday, May 27th, I had a mental breakdown. My anxiety was so high that I could feel my chest burning cold. I took an opioid and a Xanax, and then went to the pool. Trust me, this is the first time in my life I'm dealing with such medications and I was COMPLETELY ignorant of their side effects and interactions. I'm not saying I was innocent and I can take all the blame on what happened, but what I'm trying to say is that I didn't do anything on purpose, I was completely disturbed and trying to get better. When I got to the pool, I started feeling I was going to faint. I remember closing my eyes involuntarily and waking up seconds later, several times per minute. It was non-stop. I went up again and drank a bunch of water, and told my mom that I was afraid that I would close my eyes and not wake up again. That was honestly the feeling that I was having and the words I used.
Night came, I did the procedure and went to sleep, nothing major happened so far. At 4AM on Monday, May 28th (Memorial Day), I woke up with the same feeling that I would close my eyes and not wake up anymore. And what I did next was the most stupid thing someone can ever do, and I'm completely aware of the sh*tty thing I did. I went for yet another opioid and Xanax, and went back to sleep. Both pills depress your respiratory system. When you mix them together, the toxic threshold lowers down closely to the therapeutic dosage. While I slept, my respiratory system stopped working. I closed my eyes and didn't wake up. I aspirated during sleep. Prior to having a cardiac arrest, I made a very weird noise with my mouth at around 6:30AM. I know that because my mom told me -- she heard it from across the apartment and came to check on me. When she found me, I was pale, with colorless lips, drooling and not breathing. She started pushing me and screaming at me to wake up but I was completely out, unconscious, no pulse. She doesn't know English, she doesn't have a SIM Card here and she didn't know or have a way to call 911, so she went to the balcony and started screaming for help. I was very, very, very lucky. I had a neighbor who happened to be a nurse and was swimming in the pool (AT 6:30AM!!!), and she heard my mom's call for help (and she was also screaming the apartment number). She came running to help me, along with a guy that turns out works at the same Company as I do, and she started doing CPR on me. She did it for about 3 minutes until my pulse came back, but I was still unconscious. By the time the firemen, police and ambulance arrived, everybody thought I'd go in vegetative state. 8 minutes without oxygen in your brain is enough for you to have irreversible brain damage. They put me in the cot and took me to the ambulance. About five minutes away from the hospital, I regained consciousness. So, on my timeline perception, last thing I remembered was going to sleep, and then waking up aching in pain in the ambulance. A bunch of people asking me if I tried to commit suicide -- no, I didn't. I went to the emergency room and more doctors came and asked me the same thing. I wasn't able to answer with words because I was 100% dependent on the breathing machine, my lungs were full of liquid. I was feeling so much pain on my legs, and I was at some hospital I hadn't been before and had to explain them the surgery I had on my legs. They did a ultrasound on me and found one blood clot in each leg, the one on the right leg being larger.
Some doctors said that the reason for my respiratory system to have failed during my sleep is that some pieces of the blood clot might've gotten loose and went to my lungs, causing pulmonary embolism. Some other doctors think that it was because of those medications interactions. In any case, I was hospitalized for 3 days. For the first 26 hours or so, I couldn't drink or eat a single thing. I was just on saline and antibiotics. It was a nightmare, I never thought I'd say this but it was way worse than the thing that happened on my 5th day post-op when I went to the emergency thinking I'd lose my right leg.
As soon as my mom told my dad about that, he bought a ticket all the way from Brazil and arrived here 1 day after this whole thing. He helped me a lot too. At the same time, I was feeling so guilty, once again. This time, for f*cking up things and causing that much trauma to my parents. I know my mom saved me and I can't even imagine the trauma she experienced, finding me like that, screaming for help, going to the hospital without knowing if I made it there dead or alive. Being interrogated in a foreign language if her son tried suicide, and at the same time crying and worrying if I was gone for good (they wouldn't let her come with me in the ambulance).
I don't want to talk much about that week but I received a visit from coworkers and friends, and I wouldn't have the guts to tell it was because I f*cked up, because I was relying on pills to be able to go through this hard process and at the same time keep my productivity at work very high, while keeping my anxiety away. Completely selfish and stupid and I'll take sometime to forgive myself for that.
As a follow-up, I'm taking blood thinner (Xarelto) again, but now on a way higher dosage (30mg for 15 days, 20mg for 75 days). I also stopped taking the medications I was taking. The doctors at the hospital were really good and understood my whole situation. The only thing I felt bad for (that is, if I can actually feel bad about anything) is that I asked my doctors confidentiality regarding the LL. One of the doctors assured me that it was completely confidential and nobody would know about this. Next thing I know is hearing a couple of people (some nurses and nurse assistants) saying: "he was taking Norco, but it's reasonable, he went through limb lengthening, it must be very painful". I know this is nothing important and I won't even complain, just keep in mind that some people might not take your confidentiality request seriously. I know it was a hospital, but as far as I know, only the doctor needed to know about this, because he/she is the one prescribing the treatment.
Anyways, today has been more than 2 weeks since all of this. I'm getting better. This is the first time that I'm openly talking about this. I'm trying hard to overcome and forget what happened. I know I was that close to not coming back, or coming back with irreversible sequels, but somehow I got a second chance, and I really have to make it count. Some of you might judge me for keeping doing the procedure even after this, and I won't blame you. Sometimes I catch myself doing the same, wondering if I'm crazy for doing that. Makes you think about priorities, right? But I'm rational. I know that the procedure is fairly safe, and the only correlation one can make with what happened is that if I hadn't done the surgery, I wouldn't be taking the pills. Period. But I did the surgery and I could handle the medications initially, until I went back to work and started pressuring myself, which caused this mental break down. I caused this to myself and I know how to learn from my mistakes, and nothing like this will ever happen again. So that's why I will keep doing it. I've been through a lot and I overcame every obstacle. This was like the boss-obstacle lol, I can't imagine things going more wrong.
And I can at least take a few positive things from this. If it hadn't happened, I wouldn't know about the blood clots and wouldn't be treating them. I wouldn't have the help of my dad that was necessary despite this episode; I'm on the final stage of the procedure and was really a nerve wreck. I wouldn't know how dangerous these medications are, and I could do it again in the future, but without anyone around to save me. Things could go terribly wrong but they turned out fine, no sequels, apart from the memories that will take some time to go away. Finally, I'm feeling great. I'm not taking any pills and my productivity is high again. I'm feeling happy and motivated. I wouldn't be able to write that much if I wasn't. I'm excited about the upcoming weeks, about the consolidation phase. I'm looking forward to returning my life back to normal, about going back to the gym, going out with friends, going out on dates. I'm confident that things will only get better from now on.
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Dude your priorities are totally messed up! Seriously!
If you work in IT you can have 20 jobs in your life time, move across countries and continents. But you only have ONE life!(or maybe two ;) ) I never told my parents about doing LL. I knew at the time that I'm mentally and physically strong enough to cope. During LL I didn't work, just chilling, turning screws(externals) and watching comedies to keep good mood. I got valium to sleep better but my doc said only one pill before bed and I would rather myself then take more than that. People that do LL need to man up and stop relying on meds when it comes to mental strength.
Half of US is totally addicted to that sh!t. Be very careful if your mood depends on drugs. It usually means you got to makes some changes.
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Dude your priorities are totally messed up! Seriously!
If you work in IT you can have 20 jobs in your life time, move across countries and continents. But you only have ONE life!(or maybe two ;) ) I never told my parents about doing LL. I knew at the time that I'm mentally and physically strong enough to cope. During LL I didn't work, just chilling, turning screws(externals) and watching comedies to keep good mood. I got valium to sleep better but my doc said only one pill before bed and I would rather myself then take more than that. People that do LL need to man up and stop relying on meds when it comes to mental strength.
Half of US is totally addicted to that sh!t. Be very careful if your mood depends on drugs. It usually means you got to makes some changes.
Thanks man, I appreciate the feedback. Indeed I should have thought about this more carefully when I was planning this whole thing. Should have asked for 3-4 months medical leave which I had the right to, but didn't do it because I thought it would impact my ratings.
But just to give more context, it's not as if I was born in a golden crib with pre-assigned opportunities; I dedicated years of my life to have the opportunity of living in this country and working in the Sillicon Valley. Yes, I have always wanted to do LL, but I failed to put my job in second plan and always thought that if I had to choose between doing the procedure or my work, I'd choose my work.
If you go to Brazil and look at how IT people are compensated there, maybe you'll understand that it's not as simple as "if you work in IT you can have multiple jobs and go to many different countries". I even have a friend with BA in Computer Science at Berkeley and he's been looking for jobs for the past few months in the Sillicon Valley (the place of the startups) with no luck. It's not as simple as being in IT; I don't think we should despise the personal effort it takes.
But you are right in the sense that if I went to work and didn't feel I was productive, I should have made a decision as to whether stop the procedure or ask for more days off. I shouldn't follow the meds path and I don't recommend it to anyone. I didn't get addicted to them but I had a pretty serious interaction.
Enforcing my point, the only reason I disclosured this is that I'm completely aware of the bad choices I made and maybe help someone, even if just 1 person, to not do the same. Thankfully nothing happened to me but it was close. As you said, only one life. Gotta make it worth it.
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Oh my god I had an emotional roller coaster reading this. Please please PLEASE don't take multiple risks at once. Different drugs interacting with each other can have an unexpected impact on your body. Do not do anything drastic (regarding other medication) without consulting your LL doctor. Dude you almost died... I totally empathize with you not wanting to lose your job. I used to work as a software dev in Sil. Valley as well. I loved my job and my team. Leaving them was sad for all of us. But rest assured, with your skillset you can find another opportunity. It took me a lot longer than I wanted. In the process I drained a part of my 401k. But please don't play around with your life.
All the best to you on your recovery! Please keep us updated.
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That was a hard read, fallen. Even harder to recollect and distill it for us I'm sure, thanks for sharing. Your health and safety comes first no matter what, if not for you do it for your parents. Hindsight 20/20!
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Oh my god I had an emotional roller coaster reading this. Please please PLEASE don't take multiple risks at once. Different drugs interacting with each other can have an unexpected impact on your body. Do not do anything drastic (regarding other medication) without consulting your LL doctor. Dude you almost died... I totally empathize with you not wanting to lose your job. I used to work as a software dev in Sil. Valley as well. I loved my job and my team. Leaving them was sad for all of us. But rest assured, with your skillset you can find another opportunity. It took me a lot longer than I wanted. In the process I drained a part of my 401k. But please don't play around with your life.
All the best to you on your recovery! Please keep us updated.
Hey, so glad to hear from you, you were one of my inspirations to go through this. Yes, I won't be taking any risks from now on. And let me emphasize this, I wasn't taking any risks for most part of the lengthening. I was down to 1-2 Norcos a day, Vitamin D and Calcium, only. I made those mistakes from around May 17th to the day of the accident, May 29th, so for 12 days I was dumb as f*ck risking my health blindly to try to be more productive. At the end, it did the opposite, as I ended up missing a week of work because of that. If you asked me then if I thought something like this could happen, I'd say "of course not". I didn't know at all and didn't even think it was something that important to ask the LL doctor. I was honest with the psychiatrist regarding the medication I was taking (opioids) and I only heard a "be careful with these medications". She didn't emphasize on the danger of interactions so I didn't even bother asking someone else or looking it online. But I regret this so much now...
Anyways, I'm less than 2 weeks away from stopping lengthening and I made a promise to my parents that I wouldn't take any medication from that day on. I'm not taking any anxiolytic, or ADHD medication, or opioids. It's the least I could do for me and for them. Even Tylenol, it's the only exception we agreed on but at most 2 a day, but I'm not taking any. So I'm dealing with pain and it's increasing as I reach the end, but I can handle it. I feel like I was born again and I have more energy than ever. I'm really grateful to be alive and I won't mess up by any chance. And regarding jobs, I guess you're right, but in my case I'm here on H-1B. My green card is arriving by the end of the year. H-1B is linked to your company and if you leave it, you have 1 month at most to find a new job and now it's not the best timing to do job hunt. But honestly, it was all in my head. My company is being EXTREMELY supportive and with all the benefits I have, I don't want to leave it. The health insurance I have was provided by the company and it paid half of the surgery cost, which is a lot. I really want to stay here, at least for a couple more years.
Thanks for the message and hope you're doing great!
EDIT: correcting myself, I'm waiting for Dr. Mahboubian's Gabapentin prescription to arrive, and I'll actually be taking it for the nerve pains, but he said it's safe.
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That was a hard read, fallen. Even harder to recollect and distill it for us I'm sure, thanks for sharing. Your health and safety comes first no matter what, if not for you do it for your parents. Hindsight 20/20!
Yeah man, it was pretty tough to talk about it in the beginning. I was having trouble to sleep because I couldn't stop thinking that "I shouldn't be here", "how could I be so lucky?", "how could I be so stupid?". I didn't want to know what happened prior to arriving at the hospital at first, but then when my mom told me, and then when I met the two people that helped (the nurse who did CPR and the guy who helped put me on the floor), I was shocked. NEVER thought something like this was going to happen to me. But now, ~16 days later, I'm feeling more comfortable to talk about it. It wasn't easy writing it down but I'm glad I did, maybe it'll help raise awareness on the evils of pharma. I'm just glad I got away with it.
Hope you're doing fine!
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This was indeed not easy to read. I really feel sorry for your mother...
I'm happy that you're doing better now!
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i am glad you are doing better now!
is it possible to have blood clots in your legs this long after the operation? i thought they were a problem only immediately following the surgery...
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i am glad you are doing better now!
is it possible to have blood clots in your legs this long after the operation? i thought they were a problem only immediately following the surgery...
Hey fokid,
If you look at one of my first posts after the surgery, around my 5th day, I went to the emergency room with so much pain that I felt I was going to lose my leg. My right leg was extremely swollen, its perimeter outgrew the left one by many centimeters, and I had big dark bruises all over my hamstrings going down to my lower leg. I think that was the first sign that something was off. We are almost sure now that that's when I should have started the treatment. My right leg has been swollen for the entire process. Every PT that sees my hamstrings notice instantly how it's different from the left leg. Of course, not that different now, from a front perspective they look the same, but the back of the leg (which is where the femoral vein goes through) always showed a clear signal of having a DVT.
Problem was: the technician that did ultrasound on me most likely missed it. Or, the DVT was on its initial stages. In any case, Dr. Mahboubian didn't think it was a problem and told us not to worry, because the ultrasound didn't show anything. I honestly think I should had followed up and done another set of ultrasounds, like a week later. I say this because my right leg was always more swollen than the left from the entire process, something wasn't right. I trust Dr. M and respect him but maybe he overlooked this based on probabilities -- my age, my ultrasound result, his own numbers of how many of his patients had this, which should be very low. When only looking at those variables I think it's very easy to assume I didn't have anything serious. But sometimes fk the numbers, right? I had the symptoms, all of them, I can check all items on every checklist of "Symptoms of DVT". And eventually I was diagnosed with it. And add the fact that I was doing PT 5 times a day. I was moving a lot. Exercising a lot. But I wasn't on blood thinner. I don't see how it could have happened here, after I came back to the Bay Area. I'm pretty sure it developed during my first week after surgery and it was overlooked. :(
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I am very surprised that the doctor did not prescribe blood thinner with this type of surgery. With orthopedic surgeries this is a must. It is scary. Good luck. Also, there are genetic markers that can tell if you are prone to this type of cloths.
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Hey fallen, it was indeed tough to read this again, and in even more detail this time. I can imagine how frightened your parents must have been. They are such nice people, you're so fortunate to have them there supporting you (not to mention it saved your life). So glad you're back on track and doing well now. Just keep stretching as much as possible and that will help alleviate the need for Norco, especially at night time. I think it's great that you shared this with everyone to raise awareness about the possible dangers of medication.
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I am very surprised that the doctor did not prescribe blood thinner with this type of surgery. With orthopedic surgeries this is a must. It is scary. Good luck. Also, there are genetic markers that can tell if you are prone to this type of cloths.
even dr. parihar doesn't prescribe them i think.
blood thinners can increase risk of compartment syndrome apparently. https://www.allinahealth.org/mdex/ND2190G.HTM
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I am very surprised that the doctor did not prescribe blood thinner with this type of surgery. With orthopedic surgeries this is a must. It is scary. Good luck. Also, there are genetic markers that can tell if you are prone to this type of cloths.
He actually prescribes Xarelto (blood thinner) for 21 days pos-op. The problem is that blood thinners doesn't make the blood clots go away, it only helps preventing new ones from forming. What makes it go away is your own body, that will slowly absorb it, and exercising the legs, which will increase the blood flow. And I don't know if the dosage was enough (10mg, 1x a day). For the first 15 days after I was actually diagnosed with DVT, I was put on Xarelto 30mg. Then, for the next couple months, I'll be taking 20mg.
Thanks for the well wishes! Hopefully from now on, things will slowly get better.
BTW: these are my legs a few days after the surgery: https://i.imgur.com/QFDOV4z.jpg. This was actually an improvement. Try to imagine that whole right hamstring and calves completely filled with a much darker color. That's how my right leg was pos-op. So definitely something went wrong there, which probably caused the complications I had :/
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Wow. Talk about traumatizing :( Thanks for sharing, and yeah, enjoy that "born again" feeling! Life-changing moment indeed.
And regarding jobs, I guess you're right, but in my case I'm here on H-1B. My green card is arriving by the end of the year. H-1B is linked to your company and if you leave it, you have 1 month at most to find a new job and now it's not the best timing to do job hunt.
Actually, 180 days after you get your H-1B, it's no longer tied to the company that brought you to the US. I was without a job for about half a year before I got my green card and everything was fine. Look up "AC21 portability" and "I-485 adjustment of status" for details.
He actually prescribes Xarelto (blood thinner) for 21 days pos-op.
Dr. Paley prescribes Xarelto 10mg for the entire duration of the lengthening + consolidation. I will have been on it for about 5 months, every day.
BTW: these are my legs a few days after the surgery: https://i.imgur.com/QFDOV4z.jpg. This was actually an improvement. Try to imagine that whole right hamstring and calves completely filled with a much darker color. That's how my right leg was pos-op. So definitely something went wrong there, which probably caused the complications I had :/
I wouldn't say that large bruises necessarily means something went wrong. Here are my thighs after the tibias surgery:
(https://i.imgur.com/2BJrS8Q.png)
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Thanks for the info. I have heard other doctors also giving thinners for 21 days. You have gone through a lot. Get well. I am planning a surgery for my son. Really scary to think what could happen. But genetic predisposition also is a factor. He has some genes that make the clothing easy. We will see. You are brave and glad that your mom was there too. Good luck.
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This was indeed not easy to read. I really feel sorry for your mother...
I'm happy that you're doing better now!
Thank you Great321! It was really hard for her and it still is, but time heals almost anything :)
Hey fallen, it was indeed tough to read this again, and in even more detail this time. I can imagine how frightened your parents must have been. They are such nice people, you're so fortunate to have them there supporting you (not to mention it saved your life). So glad you're back on track and doing well now. Just keep stretching as much as possible and that will help alleviate the need for Norco, especially at night time. I think it's great that you shared this with everyone to raise awareness about the possible dangers of medication.
Thanks man, it is really good to get all this support. Dude, it was horrible for me but I can't imagine how disturbing and traumatic it must've been for them. I had lunch today with one of the two people that helped me after my mom screamed for help. Turns out he works at the same company as I do and he was really happy and emotional to see that I'm alive and well. F*ck, he told me things I didn't know and probably my mom didn't tell me so it didn't worsen my trauma. He said that I wasn't breathing for way more than 3 minutes, and that she kept doing chest compression for almost 6-8 minutes before I returned breathing. He was so disturbed that week for what he experienced that the next day he went to work and proposed his whole team to do a team offsite to learn how to do CPR. He said he felt guilty because he didn't know how to do it while the other neighbor knew, but he was trying to help me in any way he could. I told him that it didn't matter what he did, he cared and came running to help and helped me in anything that was within his reach or skillset and I'd be grateful for him until the rest of my life. He told me that he did exactly what he would want others to do for him. Such a good person, I think we'll watch some World Cup match together with his girlfriend and my mom sometime soon.
Thank you for such kind words about my parents! They really liked getting to know you too. My dad still talks about that afternoon till today, it was SO important for them to get more real-life stories and experiences of people going through this. Yes, I'm very lucky to have their support in this tough process. I used to tell my mom that she could stay here for just the first few weeks, if she wanted, because I know she has a life in Brazil and I didn't want her to stop her whole life in order to help take care of me for months. My dad couldn't stay here that much because he works, and he was here for my first 3 weeks of surgery and then, when all of this happened, he was calling all his coworkers to arrange his unexpected leave. So yeah, he came again when that happened and stayed an additional 2 weeks, so 5 weeks in total. It was the best thing that happened that week for me and my mom (even more to her, she really needed that support).
Yup, stretching all the time, even at my work desk. And my sole motivation for publishing this was to help raise awareness about those medications. I was reluctant at first because one may read this diary and become discouraged, but the danger of doing LL is like the danger of crossing the street (wait wait, I suck at coming up with analogies but I'll try hard to nail this one). If you cross the street paying attention, you can only get yourself injured by the randomness of external factors. If you cross with your eyes closed, you're not only facing risks independent of you, but you're increasing the odds of getting to the other side completely messed up, or not getting to the other side at all. It's all on you. Follow what the doctors say and if anything bad happens, don't blame yourself, there ARE risks, and there's a solution to most of them. I say most because I keep thinking that my nerve damage is permanent, but it actually might regenerate in the future. Do things blindly and be ready to face the consequences. I learned my lesson. ::)
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Wow. Talk about traumatizing :( Thanks for sharing, and yeah, enjoy that "born again" feeling! Life-changing moment indeed.
Actually, 180 days after you get your H-1B, it's no longer tied to the company that brought you to the US. I was without a job for about half a year before I got my green card and everything was fine. Look up "AC21 portability" and "I-485 adjustment of status" for details.
Dr. Paley prescribes Xarelto 10mg for the entire duration of the lengthening + consolidation. I will have been on it for about 5 months, every day.
I wouldn't say that large bruises necessarily means something went wrong. Here are my thighs after the tibias surgery:
(https://i.imgur.com/2BJrS8Q.png)
Yeah man, hopefully this helps someone. And you're right, I should enjoy this new life -- I already changed my birthdate.
(jk :p)
I knew about the AOS but didn't know about this 180 days rule, that's so helpful to know. I didn't know about AC21 portability though, thanks for telling me about that, I'll look it up.
And as to the bruises, did you have bumps as well? My right leg was very swollen and bumpy, as if there was something there. I also had a tender point, if you touched it I'd want to die, huge pain. My right leg was fked up since day 1, so I still believe something was wrong with it. The bruises eventually went away but the swelling persisted, it got way better but didn't go away completely, so I really think the blood clot was already there before. But I guess I'll never know :p
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Thanks for the info. I have heard other doctors also giving thinners for 21 days. You have gone through a lot. Get well. I am planning a surgery for my son. Really scary to think what could happen. But genetic predisposition also is a factor. He has some genes that make the clothing easy. We will see. You are brave and glad that your mom was there too. Good luck.
No worries! Thanks for the support. I'm glad you are being so supportive to your son. I'm positive that his process will go smoothly. And if he has blood clot predisposition, make sure the doctor knows about that and that he's obviously not taking any blood thinners prior to the surgery. But right after the surgery, having him on blood thinner throughout the process would be safe, I think. They really prevent new thrombosis formation even for people with predisposition, I believe. My sister has it too and she was on Xarelto for a period of her life.
And yes, I'm really glad that I have her here. Please keep us posted of how things go on your side, it's always helpful for people wanting to do LL and having a diary written on the perspective of a mother accompanying the whole process is something I haven't seen here and I think it would be very helpful both for mothers that are supporting their son throughout the process (as in my case) and for future LL'ers to know things from a different perspective. Good luck!
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Oh dear God, this is the most traumatic and nerve wrecking diary... Honestly as I was reading it, I myself started to sweat and could not calm down, thinking about so many 'what ifs'. Even more serious is that dr did not accept liability for this and did not give enough consideration even after first blood leakage incident. Why don't you talk with dr to compensate for this? Just a humble opinion please consider it thoroughly as for some near future, the same dr would you need in case of any further assistance, so you may not want to degrade your relationship with him.
I commend you for your bravery.Can you please tell did you do something which should not be done? I.e. unnecessary movement or medication or negligence. Was it a cardiac arrest? What exactly was the cause of cardiac arrest? How was it operated? After all this trauma, would you still recommend CLL to others?
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Oh dear God, this is the most traumatic and nerve wrecking diary... Honestly as I was reading it, I myself started to sweat and could not calm down, thinking about so many 'what ifs'. Even more serious is that dr did not accept liability for this and did not give enough consideration even after first blood leakage incident. Why don't you talk with dr to compensate for this? Just a humble opinion please consider it thoroughly as for some near future, the same dr would you need in case of any further assistance, so you may not want to degrade your relationship with him.
I commend you for your bravery.Can you please tell did you do something which should not be done? I.e. unnecessary movement or medication or negligence. Was it a cardiac arrest? What exactly was the cause of cardiac arrest? How was it operated? After all this trauma, would you still recommend CLL to others?
I don't think there's a reason for compensation, I signed a bunch of agreements and accepted all these possible risks. He is a great doctor and maybe overlooked this issue, but he has been very supportive throughout the whole process. And again, he has an opinion as to what he thinks happened from his point of view, and I have mine based on my symptoms and what other doctors said, so we can never know what really happened and where things went wrong.
As to what should not be done, you should not omit anything you're doing from your surgeon. If you'll start taking something, let him know. I got prescribed X by one doctor and Y by the doctor and they weren't aware of the medications I was taking and I didn't mention them, out of ignorance, so don't do that. And if you do that, make sure you know about the interactions of those medications. I stopped breathing and then had a cardiac arrest, during my sleep, due to medication interactions OR pulmonary embolism. There're doctors that think the reason was interactions and others that think the reason was pieces of blood clot going to my lungs. I'll never know for sure but I like to live believing that it was medication interactions, since it's something I can control. I don't like to think it was PE because I have no control over this.
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Hey, so glad to hear from you, you were one of my inspirations to go through this. Yes, I won't be taking any risks from now on. And let me emphasize this, I wasn't taking any risks for most part of the lengthening. I was down to 1-2 Norcos a day, Vitamin D and Calcium, only. I made those mistakes from around May 17th to the day of the accident, May 29th, so for 12 days I was dumb as f*ck risking my health blindly to try to be more productive. At the end, it did the opposite, as I ended up missing a week of work because of that. If you asked me then if I thought something like this could happen, I'd say "of course not". I didn't know at all and didn't even think it was something that important to ask the LL doctor. I was honest with the psychiatrist regarding the medication I was taking (opioids) and I only heard a "be careful with these medications". She didn't emphasize on the danger of interactions so I didn't even bother asking someone else or looking it online. But I regret this so much now...
Anyways, I'm less than 2 weeks away from stopping lengthening and I made a promise to my parents that I wouldn't take any medication from that day on. I'm not taking any anxiolytic, or ADHD medication, or opioids. It's the least I could do for me and for them. Even Tylenol, it's the only exception we agreed on but at most 2 a day, but I'm not taking any. So I'm dealing with pain and it's increasing as I reach the end, but I can handle it. I feel like I was born again and I have more energy than ever. I'm really grateful to be alive and I won't mess up by any chance. And regarding jobs, I guess you're right, but in my case I'm here on H-1B. My green card is arriving by the end of the year. H-1B is linked to your company and if you leave it, you have 1 month at most to find a new job and now it's not the best timing to do job hunt. But honestly, it was all in my head. My company is being EXTREMELY supportive and with all the benefits I have, I don't want to leave it. The health insurance I have was provided by the company and it paid half of the surgery cost, which is a lot. I really want to stay here, at least for a couple more years.
Thanks for the message and hope you're doing great!
EDIT: correcting myself, I'm waiting for Dr. Mahboubian's Gabapentin prescription to arrive, and I'll actually be taking it for the nerve pains, but he said it's safe.
I'm glad to hear that! I was surprised to read that coming out as gay to your parents was easier than convincing them to accept this surgery. This is why so many people wish to keep the fact that they had this surgery secret.
I was totally unaware of your H1B situation. I know several people on H1Bs messaged me about how they could have a break for LL while on that visa. I think your diary has valuable information in that regard.
Good luck with everything!
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And as to the bruises, did you have bumps as well?
No bumps or excessive pain.
I know several people on H1Bs messaged me about how they could have a break for LL while on that visa.
Even if those people aren't US permanent residents, FMLA should cover them if they've worked for the company for more than a year and other eligibility criteria are met (https://employment.findlaw.com/family-medical-leave/fmla-eligibility.html). Of course, it's good to have the Adjustment of Status filed as a backup. So TL;DR - FMLA, AOS, AC21, IANAL and consult a lawyer :)
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I don't think there's a reason for compensation, I signed a bunch of agreements and accepted all these possible risks. He is a great doctor and maybe overlooked this issue, but he has been very supportive throughout the whole process. And again, he has an opinion as to what he thinks happened from his point of view, and I have mine based on my symptoms and what other doctors said, so we can never know what really happened and where things went wrong.
As to what should not be done, you should not omit anything you're doing from your surgeon. If you'll start taking something, let him know. I got prescribed X by one doctor and Y by the doctor and they weren't aware of the medications I was taking and I didn't mention them, out of ignorance, so don't do that. And if you do that, make sure you know about the interactions of those medications. I stopped breathing and then had a cardiac arrest, during my sleep, due to medication interactions OR pulmonary embolism. There're doctors that think the reason was interactions and others that think the reason was pieces of blood clot going to my lungs. I'll never know for sure but I like to live believing that it was medication interactions, since it's something I can control. I don't like to think it was PE because I have no control over this.
Thanks a lot for the honest answer... Just few questions more...
How was your cardiac arrest operated upon?
Would ultrasound done weekly/fortnightly reduce chances of blood clotting?
Blood clots would have been there for long but you suffered this just the day on which you took medication, so does it not seem it is solely due to medication?
Also the differences in symptoms would be there if cardiac arrest was due to PE vs medication...in first case you would feel suffocation and sharp pain while in other you would be not be feeling much... Can you please ask your doctor or search Google for the same. How cardiac arrest was operated upon would also give better idea.
Would you still recommend CLL to others after all this incident.
You went to work very early, does it have to do anything with this scary experience?
Thanks in advance!
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fallen774, I'm also a male engineer in the Silicon Valley, and I'll need to go back to work in a few weeks. I'm curious, if you'd like to share in more detail, what is it like to go to work in a wheelchair?
How do your colleagues treat you?
How do you get from home to work and back?
I assume your workplace has wheelchair accommodations, but how do you get to lunch?
Do you work from your wheelchair at your desk, or do you transfer to an office chair?
Do you keep some sort of a stationary bike (https://amzn.to/2LWYcEw) under the desk to help with knee flexibility and range of motion?
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fallen774, I'm also a male engineer in the Silicon Valley, and I'll need to go back to work in a few weeks. I'm curious, if you'd like to share in more detail, what is it like to go to work in a wheelchair?
How do your colleagues treat you?
How do you get from home to work and back?
I assume your workplace has wheelchair accommodations, but how do you get to lunch?
Do you work from your wheelchair at your desk, or do you transfer to an office chair?
Do you keep some sort of a stationary bike (https://amzn.to/2LWYcEw) under the desk to help with knee flexibility and range of motion?
Yes it's possible. I used to go from home to work and back with help of relatives. Some colleagues helped at work and some were comtemptuous, like everywhere in life. I used my wheelchair at my desk. I didn't use a stationary bike at work, but at home.
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fallen774, I'm also a male engineer in the Silicon Valley, and I'll need to go back to work in a few weeks. I'm curious, if you'd like to share in more detail, what is it like to go to work in a wheelchair?
How do your colleagues treat you?
How do you get from home to work and back?
I assume your workplace has wheelchair accommodations, but how do you get to lunch?
Do you work from your wheelchair at your desk, or do you transfer to an office chair?
Do you keep some sort of a stationary bike (https://amzn.to/2LWYcEw) under the desk to help with knee flexibility and range of motion?
Everybody was super supportive here and treated me no different than they treated before, so you should expect no difference as well! You definitely get a lot of people looking but very few of them (and if they know you) will ask you what happened. I've also felt that going on a walker was more intimidating than going on a wheelchair. On a wheelchair people will look and think "must've broken his legs, normal stuff, will be over it soon.". On a walker people will look and wonder "why the hell this young guy needs a walker? I only see elderly using that. Something very weird must've happened.". At least that's what I got by occasionally asking some friends what did they think at first when they saw me like that :p
In order to get to lunch I'd always go on my walker and with coworkers, and ask them to help me to help me with my food. I'm pretty close to a few of my coworkers so it wasn't hard, but I also thought about how I would handle that. If you go on your wheelchair you don't need to worry about that and probably the workers in the restaurant would help you with your plate. My work is open office and it's very accessible, so I just put my chair far away from my desk and was using the wheelchair as my seat when I was coming on the wheelchair. And yes, I also brought my stationary bike (pedals) to work so I use them whenever I'm seated, this was mainly because of my blood clots but they should help overall.
In general, being in California, don't think people will care that much, they're usually busy minding their own problems. I didn't see it at first but then I realized that in the same way I was constantly worried about how they would see me, they're probably worrying about how others will see them as well. Yes, there are people that see you and mentally judge you and 5 seconds later they forgot about you. It doesn't aggregate anything to our lives. And no matter how nervous you get, when you get home and you're by yourself, you're going to forget everything about it. Every day you'll just have to handle it and by the time you sit on your desk you'll be over it. And then there will be the day when you're cleared to walk and you'll no longer remember that struggle. That's how I'm dealing with it :-)
Hope it helps.
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Thanks a lot for the honest answer... Just few questions more...
How was your cardiac arrest operated upon?
Would ultrasound done weekly/fortnightly reduce chances of blood clotting?
Blood clots would have been there for long but you suffered this just the day on which you took medication, so does it not seem it is solely due to medication?
Also the differences in symptoms would be there if cardiac arrest was due to PE vs medication...in first case you would feel suffocation and sharp pain while in other you would be not be feeling much... Can you please ask your doctor or search Google for the same. How cardiac arrest was operated upon would also give better idea.
Would you still recommend CLL to others after all this incident.
You went to work very early, does it have to do anything with this scary experience?
Thanks in advance!
Hey, I mentioned it earlier, my neighbor did CPR on me and that's how my heart went back to beating and I started breathing again. When the paramedics came I was already breathing but I was still unconscious. I don't know if that's what you asked but that's all I know regarding what happened prior to the ambulance.
About the ultrasound, yes, it definitely would've helped, but I'd never do it because I had no clue I had blood clots. Dr Mahboubian was pretty sure that it was just inflammation because of the surgery so I never thought I actually developed a blood clot. Finding it was at least one good outcome of this traumatic experience.
And I prefer to think that it was solely due to the medication because at least I know I have control over it. But there were two doctors seeing me in ICU and they diverged in opinion regarding that, so I'll never know for sure, but I do believe and prefer to believe and will keep believing it was because of the meds. And I'm already in treatment for the blood clots. Also, they took an X-Ray of my chest and it didn't show pieces of blood clot, so they were either gone or it just makes it even more clear that it was indeed only the meds. I don't think I ever had PE.
And yes, I didn't feel anything regarding the symptoms, I was unconscious the whole time. I went from a heavy sleep state (probably because of the meds) to having my mind abruptly shutdown (because of the cardiac arrest) without ever waking up, so I just recall going to bed and then waking up in ambulance. Didn't feel anything.
Yes, I'd recommend CLL because right now I don't feel sad all the time about my height, it really eliminated a very bad part of me. I had this neurosis since I'm a kid, and it made me the person I am (which I don't regret), but it had to go. I was tired of feeling socially anxious because of my height every time I went in public. I admire short people that don't feel like that and embrace it and can live their lives happy no matter how tall they are, but I was not one of them and there wasn't any amount of therapy that would make me feel good about being short. I blamed it for affecting me professionally and emotionally, and it was the only thing about me that I always felt needed a fix. I don't regret fixing it despise all the bad outcomes. Of course, if 3 months ago you told me "you will get very close to death because of your own irresponsibility and you'll need to be VERY lucky to get another chance", then I'd opt to live my life without this risk rather than do this surgery. But how can I not recommend CLL when I'm sure that this experience was because of my own negligence and recklessness? Other than that, what are the bad outcomes that I feel I'll take for life? Probably a loss of sensation on my lower left leg nerves, in the shin area. Would I trade that sensation for the added 2.75"? Hell yes. I'd do it again. I'm already getting over it and the sensation might eventually come back, Dr. Mahboubian told me that most of his patients get the sensation back in less than an year. If I get it back, then I won't have any bad outcomes. If I don't, that's a bad outcome I'm ok with. What else? Blood clots. Again, almost no one has it. I think I never read a diary from Dr. Mahboubian or Dr. Paley's patients in which they reported a blood clot. In that sense I think I was either unlucky or did something reckless once again. By now I'm starting to think that I did a bunch of things wrong. Maybe I thought I was exercising a lot but I actually needed more. Maybe I spent more time sitting than I should have. In any case, those are things that vary from person to person and you can always be extra safe and, if you have the symptoms, which I had but I wasn't sure if it was the clots, then do ultrasounds more often. I could have insisted to investigate it again and asked for an ultrasound order but it just never crossed my mind this would be a possibility. I said this before but I'm pretty sure that any doctor will look at your age, gender, symptoms, test results, etc. and compare it against some chart when deciding if you have something or deserve a second batch of exams. So you look at a 25yo whose tests for blood clots were negative, and he's describing a major swelling and pain in the thighs, you might as well think it's just an inflammation. So yeah, I don't blame Dr. Mahboubian, I can understand where his reasoning was coming from and if I only knew more about blood clots, I would have insisted. My dad insisted for me to ask him but I didn't take my dad seriously and didn't insist. You know your body better than anyone else, don't ever neglect it and always emphasize on how bad you're feeling. If you're not getting the answers you want, it's up to you to insist, or even go to your primary care and ask for an ultrasound. Anyways, the last thing I'd mention is athletic ability, but it's too early for me to debate on this. Soon enough I'll know how I am in that area but I'm sure I'll get most of it back with time.
TL;DR: no, I don't regret doing CLL, I think it was the best thing I've ever done to improve my mental health. It's not for everyone, only a few people have the guts to actually go and do it but if you have the courage and the need, if your height is something that has bothered you your whole life and prevents you from living fully, then go and do it, hopefully it will work out fine for you. Three things that I would have told myself before the surgery if I could, though. First, DON'T EVEN THINK ABOUT GOING TO 8CM! It's f*cking risky! If you wanna go extreme then do 7.5cm and do another f*cking surgery later on in life, but try your best to stay safe and listen to not only your doctor, but your own body -- I didn't go to 8cm but I also think I went above the safe threshold. Second, don't rely on the success rate of other patients or diaries and think that you'll be safe; in the end, age can indeed matter in terms of how fast you recovery, but you can f*ck up your recovery at any age, and it's not because you read 50 diaries where patients went through it without major obstacles that you'll also face few or none of them, the way you deal with recovery and the amount of effort and focus you put into it will really be the most important factors in a smooth recovery. And third: TAKE 16 WEEKS LEAVE! PRIORITIZE YOUR G*DAMN HEALTH! Leave work in a second plan if you really wanna go through this; I could take 16 weeks and it would be illegal to get fired because of that, but I just wanted to be an "exemplary" employee and took too few weeks off; and even after almost dying, even after having my manager telling me that it was ok to extend my leave by many more weeks to handle that, still I decided to work; yes, it was important to me because I wanted to get my head off things, but if I followed this advice in the first place then none of this would've ever happened.
And regarding going back to work after this scary experience: yes, it has everything to do with it. At home, despite my requests for my parents to stop talking about what happened, they never stopped. My dad was constantly talking about it and from time to time he would complain about how reckless I was to me and my mom (and yes, I knew that, I was telling that to myself 24/7). And my mom would cry and get nervous and also talk about it, and call her friends and cry on the phone. Even when we agreed to "no more talking about this for just 2 hours" and went out to do something, at any given moment where we saw an ambulance or someone in a wheelchair or some pharmacy or something remotely related to what happened, they would bring up the subject again. I'm not blaming them, they had their reasons and God knows what they've been through, but I needed to get this out of my mind. So yeah, I got discharged on Wednesday and got back to work on the Monday after, and I knew I needed more time to recover emotionally but it would be much easier to recover on work rather than home. At least I'd have more than 8 hours daily when I didn't have to think about how my stupidity almost killed me and traumatized my parents for good.
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I stopped lengthening yesterday at 7cm, on my 77th day post-op. Now, on to consolidation. Will be seeing Dr. Mahboubian on July 3rd.
(sorry about the title guys, and no, this is not a journal of someone going up to 8cm and proving it's safe and living happily after that with no major consequences; quite on the contrary, if you're reading this, I don't recommend going that far!)
Let me just say that some time ago I made a post here saying that I would stop when any of the following happened: I was either getting disproportional OR couldn't stand some unbearable pain OR met the technical maximum of 8cm. Funny that I stopped before any of those happened. I wasn't in pain when making the decision, I wasn't disproportional (took pictures and showed friends who didn't know about the surgery), my range of motion was very good, I could easily straighten my legs and I think I could make it to 8cm. I decided to stop early first for my family, it's the least I could do for them after all this stress and my mom couldn't bear the noise of the ERC anymore, she blames it for everything that happened and I understand. Second, for my own safety. I had many people telling me to stop earlier, even Dr. Mahboubian. He advised me to stop at 5cm because it would be safer in order to get the sensation back, and said that going further would just make it unlikely for me to feel my lower left leg ever again. I ignored. Then, at 6cm, Dr Mahboubian advised me once again to stop because it could narrow my veins and I had blood clots. Once again I was reckless and ignored. On our last conversation, he told me to go at most 7.5cm and that the extra 0.5cm wouldn't make up for all the extra risks. So when reaching 7cm I realized how much of all the bad things that happened could've been prevented if I only listened and didn't ignore. Coming to this point was risky enough after my own doctor advised me to stop several times, so what would happen if I went up to 8cm? If anything bad happened I'd mostly get a bunch of "I told you so". And what if I went up to 7.5cm and had a pulmonary embolism? Or not only lose my sensation on the left shin but also never get rid of the nerve pain? I'm on Gabapentin right now so I have no idea how bad it will be when I stop taking it. For the first time in this process, I don't want to risk more, I want to be cautious and actually have the health to enjoy the outcomes of this huge surgery. I don't want to screw up this second chance. And, after all, I'm very happy with the result -- I'm not talking about my final height, but my changed mindset. I don't feel bad or think about height anymore, so I guess my height neurosis is gone and that's all I wanted to achieve.
But speaking of numbers, I'll disclosure them anyways. I actually started at 5'5.5, so my height now is 5'8.2, or simply 5'8 :p. Not the 5'9 that I expected initially but I would never have reached it anyways, the max I'd be able to achieve was 5'8.5. Can't complain about anything, this journey was hell a couple of times, but it was mostly a blessing.
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Hey, I mentioned it earlier, my neighbor did CPR on me and that's how my heart went back to beating and I started breathing again. When the paramedics came I was already breathing but I was still unconscious. I don't know if that's what you asked but that's all I know regarding what happened prior to the ambulance.
About the ultrasound, yes, it definitely would've helped, but I'd never do it because I had no clue I had blood clots. Dr Mahboubian was pretty sure that it was just inflammation because of the surgery so I never thought I actually developed a blood clot. Finding it was at least one good outcome of this traumatic experience.
And I prefer to think that it was solely due to the medication because at least I know I have control over it. But there were two doctors seeing me in ICU and they diverged in opinion regarding that, so I'll never know for sure, but I do believe and prefer to believe and will keep believing it was because of the meds. And I'm already in treatment for the blood clots. Also, they took an X-Ray of my chest and it didn't show pieces of blood clot, so they were either gone or it just makes it even more clear that it was indeed only the meds. I don't think I ever had PE.
And yes, I didn't feel anything regarding the symptoms, I was unconscious the whole time. I went from a heavy sleep state (probably because of the meds) to having my mind abruptly shutdown (because of the cardiac arrest) without ever waking up, so I just recall going to bed and then waking up in ambulance. Didn't feel anything.
Yes, I'd recommend CLL because right now I don't feel sad all the time about my height, it really eliminated a very bad part of me. I had this neurosis since I'm a kid, and it made me the person I am (which I don't regret), but it had to go. I was tired of feeling socially anxious because of my height every time I went in public. I admire short people that don't feel like that and embrace it and can live their lives happy no matter how tall they are, but I was not one of them and there wasn't any amount of therapy that would make me feel good about being short. I blamed it for affecting me professionally and emotionally, and it was the only thing about me that I always felt needed a fix. I don't regret fixing it despise all the bad outcomes. Of course, if 3 months ago you told me "you will get very close to death because of your own irresponsibility and you'll need to be VERY lucky to get another chance", then I'd opt to live my life without this risk rather than do this surgery. But how can I not recommend CLL when I'm sure that this experience was because of my own negligence and recklessness? Other than that, what are the bad outcomes that I feel I'll take for life? Probably a loss of sensation on my lower left leg nerves, in the shin area. Would I trade that sensation for the added 2.75"? Hell yes. I'd do it again. I'm already getting over it and the sensation might eventually come back, Dr. Mahboubian told me that most of his patients get the sensation back in less than an year. If I get it back, then I won't have any bad outcomes. If I don't, that's a bad outcome I'm ok with. What else? Blood clots. Again, almost no one has it. I think I never read a diary from Dr. Mahboubian or Dr. Paley's patients in which they reported a blood clot. In that sense I think I was either unlucky or did something reckless once again. By now I'm starting to think that I did a bunch of things wrong. Maybe I thought I was exercising a lot but I actually needed more. Maybe I spent more time sitting than I should have. In any case, those are things that vary from person to person and you can always be extra safe and, if you have the symptoms, which I had but I wasn't sure if it was the clots, then do ultrasounds more often. I could have insisted to investigate it again and asked for an ultrasound order but it just never crossed my mind this would be a possibility. I said this before but I'm pretty sure that any doctor will look at your age, gender, symptoms, test results, etc. and compare it against some chart when deciding if you have something or deserve a second batch of exams. So you look at a 25yo whose tests for blood clots were negative, and he's describing a major swelling and pain in the thighs, you might as well think it's just an inflammation. So yeah, I don't blame Dr. Mahboubian, I can understand where his reasoning was coming from and if I only knew more about blood clots, I would have insisted. My dad insisted for me to ask him but I didn't take my dad seriously and didn't insist. You know your body better than anyone else, don't ever neglect it and always emphasize on how bad you're feeling. If you're not getting the answers you want, it's up to you to insist, or even go to your primary care and ask for an ultrasound. Anyways, the last thing I'd mention is athletic ability, but it's too early for me to debate on this. Soon enough I'll know how I am in that area but I'm sure I'll get most of it back with time.
TL;DR: no, I don't regret doing CLL, I think it was the best thing I've ever done to improve my mental health. It's not for everyone, only a few people have the guts to actually go and do it but if you have the courage and the need, if your height is something that has bothered you your whole life and prevents you from living fully, then go and do it, hopefully it will work out fine for you. Three things that I would have told myself before the surgery if I could, though. First, DON'T EVEN THINK ABOUT GOING TO 8CM! It's f*cking risky! If you wanna go extreme then do 7.5cm and do another f*cking surgery later on in life, but try your best to stay safe and listen to not only your doctor, but your own body -- I didn't go to 8cm but I also think I went above the safe threshold. Second, don't rely on the success rate of other patients or diaries and think that you'll be safe; in the end, age can indeed matter in terms of how fast you recovery, but you can f*ck up your recovery at any age, and it's not because you read 50 diaries where patients went through it without major obstacles that you'll also face few or none of them, the way you deal with recovery and the amount of effort and focus you put into it will really be the most important factors in a smooth recovery. And third: TAKE 16 WEEKS LEAVE! PRIORITIZE YOUR G*DAMN HEALTH! Leave work in a second plan if you really wanna go through this; I could take 16 weeks and it would be illegal to get fired because of that, but I just wanted to be an "exemplary" employee and took too few weeks off; and even after almost dying, even after having my manager telling me that it was ok to extend my leave by many more weeks to handle that, still I decided to work; yes, it was important to me because I wanted to get my head off things, but if I followed this advice in the first place then none of this would've ever happened.
And regarding going back to work after this scary experience: yes, it has everything to do with it. At home, despite my requests for my parents to stop talking about what happened, they never stopped. My dad was constantly talking about it and from time to time he would complain about how reckless I was to me and my mom (and yes, I knew that, I was telling that to myself 24/7). And my mom would cry and get nervous and also talk about it, and call her friends and cry on the phone. Even when we agreed to "no more talking about this for just 2 hours" and went out to do something, at any given moment where we saw an ambulance or someone in a wheelchair or some pharmacy or something remotely related to what happened, they would bring up the subject again. I'm not blaming them, they had their reasons and God knows what they've been through, but I needed to get this out of my mind. So yeah, I got discharged on Wednesday and got back to work on the Monday after, and I knew I needed more time to recover emotionally but it would be much easier to recover on work rather than home. At least I'd have more than 8 hours daily when I didn't have to think about how my stupidity almost killed me and traumatized my parents for good.
God bless you and all CLLers....
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I have no words that I can use after all you went through. I'm just extremely glad you are alive.
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Have you read pulmonary embolism in wiki? It's written clearly if legs show redness and swelling, it is very likely to be a case of deep vein thrombosis and thrombosis is one of the main cause of blood clot and eventually PE. Why did your dr did not take any note of your red or even maroon-blackish legs and ordered ultrasound then and there.
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Have you read pulmonary embolism in wiki? It's written clearly if legs show redness and swelling, it is very likely to be a case of deep vein thrombosis and thrombosis is one of the main cause of blood clot and eventually PE. Why did your dr did not take any note of your red or even maroon-blackish legs and ordered ultrasound then and there.
I know I write a lot, so maybe you missed when I explained why I think he did that. I said it in 2 posts. Now as to the real reasons, I'd have to get in his head.
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I made this video right after stopping lengthening, in which I take a few steps unaided. This is how my gait was looking like 4 days ago, on June 21st (I stopped lengthening on June 20th). If you pay attention you can notice my legs are sometimes swinging in a circular motion. That's because I'm adapting to my new way of walking now since I had my femurs rotated inwards during surgery to fix a problem that I had. I think my gait overall looks ok for only 1 day after stopping lengthening, but I'm still using my arms a lot to keep balance. Hopefully, I'll improve it soon.
https://vimeo.com/277002921 (https://vimeo.com/277002921)
Password: ll
And yeah, I didn't get cleared out to full weight bear, it should happen on the first or second week of July. Yet, I know that my weight went down from 145lbs to ~120lbs and, after being on the walker for almost 3 months and getting to know my body and how much I could handle, I felt comfortable to try that for just a few seconds. Also, AFAIK 75lbs per rod is a conservative limit, but from my experience it supports more than that, but not too much. I felt it supported me and that's why I tried. Still, I don't recommend trying until you get the OK. I'll still wait to be cleared out in order to walk full weight bearing and then I'll shoot another vid. Hope you guys enjoy the rainbow glasses and #happypride ;D
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Very nice!
And yeah, I didn't get cleared out to full weight bear, it should happen on the first or second week of July. Yet, I know that my weight went down from 145lbs to ~120lbs and the titanium rods can support more than that. I'll still wait to be cleared out in order to walk long distances full weight bearing and then I'll shoot another vid.
You're using the PRECICE 2, right? I thought the largest nail could only do 75lbs?
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Very nice!
You're using the PRECICE 2, right? I thought the largest nail could only do 75lbs?
Yes, that's the limit doctors give, so don't be like me!
(I rewrote my previous post so it explains more about the limit and why I tried, but I don't recommend trying unless you feel safe like I did)
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I made this video right after stopping lengthening, in which I take a few steps unaided. This is how my gait was looking like 4 days ago, on June 21st (I stopped lengthening on June 20th). If you pay attention you can notice my legs are sometimes swinging in a circular motion. That's because I'm adapting to my new way of walking now since I had my femurs rotated inwards during surgery to fix a problem that I had. I think my gait overall looks ok for only 1 day after stopping lengthening, but I'm still using my arms a lot to keep balance. Hopefully, I'll improve it soon.
https://vimeo.com/277002921 (https://vimeo.com/277002921)
Password: ll
And yeah, I didn't get cleared out to full weight bear, it should happen on the first or second week of July. Yet, I know that my weight went down from 145lbs to ~120lbs and, after being on the walker for almost 3 months and getting to know my body and how much I could handle, I felt comfortable to try that for just a few seconds. Also, AFAIK 75lbs per rod is a conservative limit, but from my experience it supports more than that, but not too much. I felt it supported me and that's why I tried. Still, I don't recommend trying until you get the OK. I'll still wait to be cleared out in order to walk full weight bearing and then I'll shoot another vid. Hope you guys enjoy the rainbow glasses and #happypride ;D
Can you please tell what exactly does weight bearing nails do which non-weight bearing would not do.
Do they help in early lengthening and fast rehabilitation?
Can a person walk unaided even during lengthening?
Do they cause lesser loss of muscle mass?
I am asking this question to assess how better precice 3 would be compared to precice 2. If you can comment on that, it would be very helpful.
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I am asking this question to assess how better precice 3 would be compared to precice 2. If you can comment on that, it would be very helpful.
PRECICE 3 (actually branded STRYDE) enables patients to walk during lengthening. The first STRYDE patient, whom I met at the Paley Institute in May, is now walking unaided, 4 weeks post-op.
(https://lh3.googleusercontent.com/H80UFW0pyeTt6xyr_QiT2QDLkAWWXpCl5tyPM-bADm6Z3mEnAiec4kOF9_gLEsk7VeSl_RXYj5GCadz5MM_uI1pg_liliua1ZmMrSEdBfWoyHVXlW6ERJhq9o-lO8HU5l_qM4P9cXkzzImbH_9wLSOZIak-EVDQOvCiaqs_Lm0Ye4edVMU7fOtMk5NQliV1NgBf0pTWqXLdvsqlz3qRz-IWKoxMAiHO7aAThDb48O_vcJMkFVFQ8zwWgjl9oyQEAuc9p3BYto5LSjKpIycOYwN1uXa5H5ERHUHUN8L-w7oM1ljpFXjdC_AjqvqMY2Byj1l9uOjxNV5swwM2YCcuBppDt45nAQGWMSuL2qV9n0ETtPpi9RDir_IKE64ivf4hTGA_OS0-Tt3JR2IufzshkOo3YpYyFheb7MqsmlaNDQ2htmGnLwADwwouNxHYGbCVpHjnW9YowAGKP8DulFOOr8bOsTCb4mTEfPVDjrTQIYgasMggBwuvfe2n_RDtZiGE40BwWzCo5jJQ6XG64J6SLSTacJmBAAW5VE86hPmObORohsY8hQ19QnIFGLPh5fkEn4aiscJ0ThFvTgnjpr_-JdGYfKgieUadP__Z9_G47=w574-h964-no)
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PRECICE 3 (actually branded STRYDE) enables patients to walk during lengthening. The first STRYDE patient, whom I met at the Paley Institute in May, is now walking unaided, 4 weeks post-op.
(https://lh3.googleusercontent.com/H80UFW0pyeTt6xyr_QiT2QDLkAWWXpCl5tyPM-bADm6Z3mEnAiec4kOF9_gLEsk7VeSl_RXYj5GCadz5MM_uI1pg_liliua1ZmMrSEdBfWoyHVXlW6ERJhq9o-lO8HU5l_qM4P9cXkzzImbH_9wLSOZIak-EVDQOvCiaqs_Lm0Ye4edVMU7fOtMk5NQliV1NgBf0pTWqXLdvsqlz3qRz-IWKoxMAiHO7aAThDb48O_vcJMkFVFQ8zwWgjl9oyQEAuc9p3BYto5LSjKpIycOYwN1uXa5H5ERHUHUN8L-w7oM1ljpFXjdC_AjqvqMY2Byj1l9uOjxNV5swwM2YCcuBppDt45nAQGWMSuL2qV9n0ETtPpi9RDir_IKE64ivf4hTGA_OS0-Tt3JR2IufzshkOo3YpYyFheb7MqsmlaNDQ2htmGnLwADwwouNxHYGbCVpHjnW9YowAGKP8DulFOOr8bOsTCb4mTEfPVDjrTQIYgasMggBwuvfe2n_RDtZiGE40BwWzCo5jJQ6XG64J6SLSTacJmBAAW5VE86hPmObORohsY8hQ19QnIFGLPh5fkEn4aiscJ0ThFvTgnjpr_-JdGYfKgieUadP__Z9_G47=w574-h964-no)
Did you post any pic/video in the post? If you did it's not visible/opening.
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How was the Stryde patient’s walking? Probably pretty slow at this point? That is great to hear! Thanks for updating us on him.
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I made this video right after stopping lengthening, in which I take a few steps unaided. This is how my gait was looking like 4 days ago, on June 21st (I stopped lengthening on June 20th). If you pay attention you can notice my legs are sometimes swinging in a circular motion. That's because I'm adapting to my new way of walking now since I had my femurs rotated inwards during surgery to fix a problem that I had. I think my gait overall looks ok for only 1 day after stopping lengthening, but I'm still using my arms a lot to keep balance. Hopefully, I'll improve it soon.
https://vimeo.com/277002921 (https://vimeo.com/277002921)
Password:
And yeah, I didn't get cleared out to full weight bear, it should happen on the first or second week of July. Yet, I know that my weight went down from 145lbs to ~120lbs and, after being on the walker for almost 3 months and getting to know my body and how much I could handle, I felt comfortable to try that for just a few seconds. Also, AFAIK 75lbs per rod is a conservative limit, but from my experience it supports more than that, but not too much. I felt it supported me and that's why I tried. Still, I don't recommend trying until you get the OK. I'll still wait to be cleared out in order to walk full weight bearing and then I'll shoot another vid. Hope you guys enjoy the rainbow glasses and #happypride ;D
So glad to see you up and walking, despite the gait and everything else, and even if only for this vid. Thanks for sharing it.
And wow, it doesn't even look you lengthened your legs to me! Your torso still seems bigger, or at least 50% of your height.
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He is taller for sure, but the shirt makes his torso look longer. I'm glad to see him making progress every day.
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1 week post-lengthening
Hey there, just to give a quick update 1 week after I stopped lengthening:
- the nerve pain on my left lower leg is 90% gone. I didn't take Gabapentin for the past 3 days so I think it's definitely gonna be 100% better soon.
- I'm regaining sensation on my left lower leg. I can feel it again when someone touches it and I have my eyes closed (I couldn't before) and I feel it's improving fast day by day.
- I'm only taking Xarelto (blood thinner for the clots) and the supplements (Vitamin D3 and Calcium), no pain killers, not even Tylenol
- No pain overall, average 0/10 throughout the day BUT, when I'm seated for more than 30 minutes and I get up, I feel a little stiff on the hamstrings, but it goes away after a few seconds. Definitely getting better too. I also felt some pain in my hips when walking but it comes and goes, and it's decreasing too.
- PT still 5x a week, I don't think it's necessary but I'll do anything that might help.
- Germany 0 x 2 South Korea 8) 8) 8)
So yeah, now I'm left with treating the blood clots and hopefully by the end I'll have dealt with every complication I had during recovery.
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By "I don't think it's necessary" please interpreted as "I don't think it's necessary 5x a week at this point, so maybe 4x or 3x".
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Before and after comparison pics?
Good to hear everything is going well
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Fallen, could you go a bit more in detail about this?
And I'm already in treatment for the blood clots.
Also, regarding your experience... Do you think all prospective LLers should do any kind of exams beforehand (that maybe the doctors don't usually ask), or any kind of blood clot treatment prior to having their LL surgery?
I mean, the major risks of this surgery, other than non-union and infections (up to osteomyelitis (https://en.wikipedia.org/wiki/Osteomyelitis)), are mostly all related to forms of embolism. Considering how many of us were/are people who spend so much time sat in a chair during the day, I think this subject is among the most vital ones for the community. The prolonged immobility just after the surgery also doesn't help in the case of patients with predisposition.
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Today I complete 3 months+1 day since surgery (93 days) and 16 days since I stopped lengthening.
Saw Dr. Mahboubian last Tuesday (July 3rd), so about 2 weeks into consolidation. He cleared me out to use crutches or walk unaided if I feel I have enough support/strength on my legs (which I do, although they lost a lot of muscle). He said that in < 2 weeks I should be cleared to go up/down stairs without support and in < 6 weeks I should be cleared to running/jumping *fingers crossed*.
Ever since my appointment I've been walking unaided. Won't say that I'm 100% free of pain, my hip muscles still need to catch up in terms of strength, but the discomfort is minimal.
X-Rays:
https://imgur.com/a/XZNLFtk
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Before and after comparison pics?
Good to hear everything is going well
That's coming up :) I took a pic with a friend that is the same height as I was (a little bit taller), and he's coming to visit me next Tuesday so I'll take another one for comparison and will post it here.
Fallen, could you go a bit more in detail about this?
Also, regarding your experience... Do you think all prospective LLers should do any kind of exams beforehand (that maybe the doctors don't usually ask), or any kind of blood clot treatment prior to having their LL surgery?
I mean, the major risks of this surgery, other than non-union and infections (up to osteomyelitis (https://en.wikipedia.org/wiki/Osteomyelitis)), are mostly all related to forms of embolism. Considering how many of us were/are people who spend so much time sat in a chair during the day, I think this subject is among the most vital ones for the community. The prolonged immobility just after the surgery also doesn't help in the case of patients with predisposition.
Just meant that I'm doing everything that is possible, which is taking blood thinner and doing exercises. There isn't much more that could be done. Next week I complete 45 days since finding out about the DVT and will do a new ultrassound to see if they're still there. My quads are much more loose so I'm really hoping to hear some good news. Dr. Mahboubian and other doctors told me several times that it's extremely uncommon to have it after surgery, and since my sister recently found out she has thrombophilia (a condition that increases the risk for blood clots), I guess I might have it too and that could explain why I had the clots.
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You've got some really healthy regenerate. In 2 months you will feel brand new.
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Hey there,
My surgery is scheduled for April 5th, so I'll update this thread with how it goes. I'm currently 5'6 aiming at 5'9. I research and desire to go under this procedure for more than a decade now. I've told my closest friends and family. It was really hard convincing my folks to accept it. They won't be paying for a thing, I'll pay everything out of my own pocket, but still, they are very conservative people. Besides that, my dad is a radiologist, so bones are kind of his thing and he dedicated almost an entire day on Skype lecturing me about the possible complications.
A little bit about me: I'm a 25yo male engineer in Sillicon Valley. I'm originally from Brazil and moved here about an year ago. I was born with an external rotation on my hips, which basically means that I walk wiggling my butt. It also hurts when I hike or sprint, as I seem to put too much pressure on my shins. Anyhow, I spent an entire life pittying myself for being both short and with funny legs, but the latter turned up being a money saver. I went on my surgeon (Dr. Mahboubian, in North Hollywood) first visit back 3 months ago, and he told me he's able to fix my bone rotation in the same procedure. In other terms, since the surgery now qualifies for an anatomic correction, my health insurance will pay for the hospital fees (which is roughly half the price of the whole thing). Yay.
Now, about why I'm doing this: not for the women, let me make this clear. Most of the posts on this forum are about height insecurities in the sxxual context, which is a pretty plausible reason, but mine isn't that. First, I play for the other team. Second, I feel my height affects my professional context much more. I've felt my entire life that I was not taken very seriously by friends or co-workers, in the sense that I'm often target of jokes, keep being called "half-a-person" and things like that. Just like a transsxxual person looks in the mirror and can't identify with the body they live in, I look in the mirror and never felt happy about the height of my own body. Just the height, nothing more. Maybe that's a thing that psychoanalysts will eventually talk about.
I'm very excited about the upcoming months. I'll take 1 month leave from work. I'll try to use half vacation time and half sick time off. It will also be a correction surgery after all, which is going to improve my overall health and well-being. My co-workers only know about the correction part. They know I feel pain in my legs and my outdoor activity is very limited. They don't know about the other side of the coin and I prefer to maintain like that. There's too much taboo around this procedure and I don't want funny looks. Also, I've been using lifting shoes for the past year, which give me around 6cm. I'll stop using them after the surgery so it becomes almost unnoticeable.
Finally, I decided to not stop my life during the recovery months. I don't know if I'll manage, but I'll keep going to the office. In a wheelchair, of course. My mom will be here with me for 3 months, so she will help me with everyday things.
That's it for today. I'm really excited and will keep you all posted. Hopefully I can help some of you and you can help me back. Talk soon!
You say you plan to take only 1 months leave, but then how will you complete your LL? it would take minimum 4 months total.
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You say you plan to take only 1 months leave, but then how will you complete your LL? it would take minimum 4 months total.
It's already completed, my friend ::)
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Wow. Talk about traumatizing :( Thanks for sharing, and yeah, enjoy that "born again" feeling! Life-changing moment indeed.
Actually, 180 days after you get your H-1B, it's no longer tied to the company that brought you to the US. I was without a job for about half a year before I got my green card and everything was fine. Look up "AC21 portability" and "I-485 adjustment of status" for details.
Dr. Paley prescribes Xarelto 10mg for the entire duration of the lengthening + consolidation. I will have been on it for about 5 months, every day.
I wouldn't say that large bruises necessarily means something went wrong. Here are my thighs after the tibias surgery:
(https://i.imgur.com/2BJrS8Q.png)
on h1b you can remain in the US without job for maximum 60 days (thanks to Obama, before that it was 0 days!!) so now way can you be on h1b and without a job for 6 months in the US, it would be illegal
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on h1b you can remain in the US without job for maximum 60 days (thanks to Obama, before that it was 0 days!!) so now way can you be on h1b and without a job for 6 months in the US, it would be illegal
What I said about H-1B isn't contradicted by what you said (which is correct (http://www.immi-usa.com/h1b-grace-period-sgm-law-group/), in the strict sense of being without a job as an H-1B without having filed for anything else towards getting a green card). Perhaps I should've been clearer than just suggesting you look up AC21 and I-485 adjustment of status: if you file for that and get an EAD, you can be out of a job and still legally remain in the US. Again, I've done, and then got my Green Card.
Another major concern for foreign nationals who have lost their jobs during the green card process is maintaining lawful status after their employer lays them off. If you have already filed the I-485 application, you are in “authorized status,” and losing your job – in and of itself – does NOT automatically jeopardize your status.
[...]
The EAD allows you to work for any (or multiple) U.S. employers without requiring the employer to file an H-1B petition (or other work visa petition) on your behalf. Remember, once you have a new employment offer, you may qualify for “porting” under AC21
- http://www.alllaw.com/articles/nolo/us-immigration/laid-off-before-get-green-card.html
PS: please quote only the relevant portion of a post when replying. The image of my bruises had nothing to do with immigration matters :)
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Crazy Log bro! glad you're still here with us and got your height neurosis successfuly taken care of in the end !
any updates?
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hey fallen, i hope your recovery is going well! if i could ask what is your wingspan? i checked your gait video and you still look AMAZINGLY proportional after 7cm! thx
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Alright guys, I thought it thoroughly and I think it's ok for me to disclosure what happened, and it hopefully will help someone to not do the same.
On May 14th, Monday, I went back to work. I thought I was prepared for the social anxiety, for dealing with people looking at me, but I actually wasn't. I wasn't much productive on my first few days back at work, but my whole team (which is essentially a suborganization within a company in the software engineering world) was extremely supportive. The FMLA could give me a medical leave of up to 16 weeks, but it was a personal decision to take 6 weeks. Actually, the initial idea was to take only 2 weeks of leave, work 2 weeks from home and then go back to work. But if you guys read my posts, you know that there were a couple complications along the way. My plan to go back to the Bay Area by the end of April went downhill when I realized my right leg was still in a lot of pain and swollen, and I felt safer being closer to the doctor.
Although some days I'd wake up in a better mood, I tried to get work done but I guess my seratonin levels were very low. The first month of the surgery just drains your whole energy. Or, at least, it drained mine. So, I went back to work and I couldn't produce much, but I felt VERY guilty that an elective surgery would impact my performance. I felt bad for being unproductive to my team and to my coworkers. I know it was all in my head. I talked to my manager and she was extremely complacent with the situation. They would even tell me that I could work from home a couple of days in the week. But despite all this, I still felt guilty. So what I did? I scheduled an appointment with a psychiatrist and got ADHD medication. Those pills are used by teenagers and adults with ADHD and I felt I could benefit from that since my attention span was f*cked up after 1 month and a half away. Not only that, I also got prescribed Xanax (Alprazolam), as a short-term solution for my anxiety. Apart from that, I was also taking opioids. If you know something about psychotropic medications interaction, you can already guess the sh*t I've done.
Let's go: my productivity became GREAT. I was able to focus and code and give insights on meetings. I felt like super-man during the day, lol. So by Friday, May 25th, I was completing 2 weeks back to work and I was feeling great. My nerve pains (which I've been having since the beginning of May) were unnoticeable. I couldn't stop talking. I felt happy about the smallest things. But none of this was natural. I was actually completely disturbed and couldn't even notice. By Sunday, May 27th, I had a mental breakdown. My anxiety was so high that I could feel my chest burning cold. I took an opioid and a Xanax, and then went to the pool. Trust me, this is the first time in my life I'm dealing with such medications and I was COMPLETELY ignorant of their side effects and interactions. I'm not saying I was innocent and I can take all the blame on what happened, but what I'm trying to say is that I didn't do anything on purpose, I was completely disturbed and trying to get better. When I got to the pool, I started feeling I was going to faint. I remember closing my eyes involuntarily and waking up seconds later, several times per minute. It was non-stop. I went up again and drank a bunch of water, and told my mom that I was afraid that I would close my eyes and not wake up again. That was honestly the feeling that I was having and the words I used.
Night came, I did the procedure and went to sleep, nothing major happened so far. At 4AM on Monday, May 28th (Memorial Day), I woke up with the same feeling that I would close my eyes and not wake up anymore. And what I did next was the most stupid thing someone can ever do, and I'm completely aware of the sh*tty thing I did. I went for yet another opioid and Xanax, and went back to sleep. Both pills depress your respiratory system. When you mix them together, the toxic threshold lowers down closely to the therapeutic dosage. While I slept, my respiratory system stopped working. I closed my eyes and didn't wake up. I aspirated during sleep. Prior to having a cardiac arrest, I made a very weird noise with my mouth at around 6:30AM. I know that because my mom told me -- she heard it from across the apartment and came to check on me. When she found me, I was pale, with colorless lips, drooling and not breathing. She started pushing me and screaming at me to wake up but I was completely out, unconscious, no pulse. She doesn't know English, she doesn't have a SIM Card here and she didn't know or have a way to call 911, so she went to the balcony and started screaming for help. I was very, very, very lucky. I had a neighbor who happened to be a nurse and was swimming in the pool (AT 6:30AM!!!), and she heard my mom's call for help (and she was also screaming the apartment number). She came running to help me, along with a guy that turns out works at the same Company as I do, and she started doing CPR on me. She did it for about 3 minutes until my pulse came back, but I was still unconscious. By the time the firemen, police and ambulance arrived, everybody thought I'd go in vegetative state. 8 minutes without oxygen in your brain is enough for you to have irreversible brain damage. They put me in the cot and took me to the ambulance. About five minutes away from the hospital, I regained consciousness. So, on my timeline perception, last thing I remembered was going to sleep, and then waking up aching in pain in the ambulance. A bunch of people asking me if I tried to commit suicide -- no, I didn't. I went to the emergency room and more doctors came and asked me the same thing. I wasn't able to answer with words because I was 100% dependent on the breathing machine, my lungs were full of liquid. I was feeling so much pain on my legs, and I was at some hospital I hadn't been before and had to explain them the surgery I had on my legs. They did a ultrasound on me and found one blood clot in each leg, the one on the right leg being larger.
Some doctors said that the reason for my respiratory system to have failed during my sleep is that some pieces of the blood clot might've gotten loose and went to my lungs, causing pulmonary embolism. Some other doctors think that it was because of those medications interactions. In any case, I was hospitalized for 3 days. For the first 26 hours or so, I couldn't drink or eat a single thing. I was just on saline and antibiotics. It was a nightmare, I never thought I'd say this but it was way worse than the thing that happened on my 5th day post-op when I went to the emergency thinking I'd lose my right leg.
As soon as my mom told my dad about that, he bought a ticket all the way from Brazil and arrived here 1 day after this whole thing. He helped me a lot too. At the same time, I was feeling so guilty, once again. This time, for f*cking up things and causing that much trauma to my parents. I know my mom saved me and I can't even imagine the trauma she experienced, finding me like that, screaming for help, going to the hospital without knowing if I made it there dead or alive. Being interrogated in a foreign language if her son tried suicide, and at the same time crying and worrying if I was gone for good (they wouldn't let her come with me in the ambulance).
I don't want to talk much about that week but I received a visit from coworkers and friends, and I wouldn't have the guts to tell it was because I f*cked up, because I was relying on pills to be able to go through this hard process and at the same time keep my productivity at work very high, while keeping my anxiety away. Completely selfish and stupid and I'll take sometime to forgive myself for that.
As a follow-up, I'm taking blood thinner (Xarelto) again, but now on a way higher dosage (30mg for 15 days, 20mg for 75 days). I also stopped taking the medications I was taking. The doctors at the hospital were really good and understood my whole situation. The only thing I felt bad for (that is, if I can actually feel bad about anything) is that I asked my doctors confidentiality regarding the LL. One of the doctors assured me that it was completely confidential and nobody would know about this. Next thing I know is hearing a couple of people (some nurses and nurse assistants) saying: "he was taking Norco, but it's reasonable, he went through limb lengthening, it must be very painful". I know this is nothing important and I won't even complain, just keep in mind that some people might not take your confidentiality request seriously. I know it was a hospital, but as far as I know, only the doctor needed to know about this, because he/she is the one prescribing the treatment.
Anyways, today has been more than 2 weeks since all of this. I'm getting better. This is the first time that I'm openly talking about this. I'm trying hard to overcome and forget what happened. I know I was that close to not coming back, or coming back with irreversible sequels, but somehow I got a second chance, and I really have to make it count. Some of you might judge me for keeping doing the procedure even after this, and I won't blame you. Sometimes I catch myself doing the same, wondering if I'm crazy for doing that. Makes you think about priorities, right? But I'm rational. I know that the procedure is fairly safe, and the only correlation one can make with what happened is that if I hadn't done the surgery, I wouldn't be taking the pills. Period. But I did the surgery and I could handle the medications initially, until I went back to work and started pressuring myself, which caused this mental break down. I caused this to myself and I know how to learn from my mistakes, and nothing like this will ever happen again. So that's why I will keep doing it. I've been through a lot and I overcame every obstacle. This was like the boss-obstacle lol, I can't imagine things going more wrong.
And I can at least take a few positive things from this. If it hadn't happened, I wouldn't know about the blood clots and wouldn't be treating them. I wouldn't have the help of my dad that was necessary despite this episode; I'm on the final stage of the procedure and was really a nerve wreck. I wouldn't know how dangerous these medications are, and I could do it again in the future, but without anyone around to save me. Things could go terribly wrong but they turned out fine, no sequels, apart from the memories that will take some time to go away. Finally, I'm feeling great. I'm not taking any pills and my productivity is high again. I'm feeling happy and motivated. I wouldn't be able to write that much if I wasn't. I'm excited about the upcoming weeks, about the consolidation phase. I'm looking forward to returning my life back to normal, about going back to the gym, going out with friends, going out on dates. I'm confident that things will only get better from now on.
i know this is old, but I just read all of this, and you ending up in the hospital definitely had to do with the drug interaction. You can easily unintentionally overdose on opiods. and mixing them with benzodiazepines is a fatal mix. Read this: https://www.webmd.com/mental-health/addiction/news/20170315/opioid-painkillers-and-xanax-or-valium-a-deadly-mix-study#1
Of all fatal overdoses from narcotic medications, nearly 30 percent also involved benzodiazepines, such as Xanax, Klonopin and Valium, the researchers said.
When patients take benzodiazepines along with narcotic painkillers such as Oxycontin, Percocet and Vicodin, the mix lowers the threshold for an overdose, said Sun. He is an assistant professor of anesthesiology, perioperative and pain medicine at Stanford University.
i do not even know why you were or are taking opiods. You shouldn't need such strong pain medication that is easily abused and leads to thousands of deaths per year.
furthermore from: https://www.fds.org.au/images/Benzos.pdf
Problems associated with benzodiazepine abuse may include:
PHYSICAL PROBLEMS
• Organ damage
• Collapsed veins and poor circulation
which can lead to amputation of
limbs
• Cellulitis (red, swollen, infected skin)
• Stroke
• Thrombosis (blood clots)
• Endocarditis (heart infection)
• Vertigo
• Liver damage.
you need to be smarter about all of this. And this is a lesson for everyone to always ask your doctor about drug interactions and/or if you should even be taking these strong medications post orthopedic surgery. Hope you have a good recovery bro
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Hey guys.
Sorry for the disappearance. Its true what all the other veterans say -- after a while you want to move on and forget about this once and for all. In my case, the hardest memories still lingered for a while. My story had quite of a significant repercussion, but it had a good outcome. Long story short is that one of the people responsible for helping on that morning became a terrific friend, and asked me if he could post about it. The reasoning for the post is that he wanted to tell people the benefits of taking CPR classes. He would avoid any mentioning of names, but at that point, I wasn't ashamed of publicly acknowledging that I went through this cardiac arrest caused by bad medication interaction.
His post got tens or hundreds of shares, and many people reacted positively to it, signing up for CPR classes. Since this forum is public and what I described here matches what he shared, some people identified me and messaged asking if I was fallen774 and if I would be willing to meet up to tell a little bit more about the journey, which I gladly did. I'm more than happy to help people in any way I can, even if just by sharing my journey. The preparation phase, the first few weeks of unbearable pain, the unforeseeable stumbling blocks which may appear in the way, the help you will need from others, and the discipline required for a smooth recovery.
Early in September, I had my last follow-up with Dr. M. I flew to Burbank and took the last set of X-Rays. My bones are fully consolidated, and I'm about to schedule the removal of the rods. He wants to do it in January, but I'll probably postpone it to March — my family will be visiting me, and I want to align things with their visit so that when they leave, my mom will stay and help me out with this last phase. She's very insistent in wanting to be here to help.
After that last visit, I stopped my PT sessions, and am slowly going back to the gym. I don't feel any pain for quite a few months now, I recovered almost all of the sensation on my lower left leg, and I'm able to run and do exercises without any limitation. But quite frankly, I'm trying to prioritize other things in my life right now, so I haven't gotten back to my previous weight. For the first time in my life, I'm just fine with my body. I go to work or go out to dance, and I just don't get overwhelmed with the thoughts of others judging me or thinking less of me anymore. I don't think this is a result of the surgery itself, but of the mental (and possibly spiritual) maturity that you will gain after going through this, even if you believe you already are mature enough. After going through so much, you finally learn to give the proper importance to things in life. And no, I'm not saying that because "it's easy to say after I already gained a few inches.". I'm now more skinny than ever and would have the same motives to keep thinking others are judging me by my lack of muscles, but these distorted thoughts don't cross my mind anymore.
I'm thrilled with how I am, and I'm in no hurry to change, and if I ever do want to change anything again, it'll be for me, not others. You are probably tired of reading this on veterans diaries, but its the pure truth: only do this if it's for yourself. If you do it for others, you might still be unhappy when you realize that not much changes in how others treat you. But if you do it for yourself, you'll treat yourself better, and this will have a significant impact on your social life as well. It all boils down to giving the proper value to yourself, and only then you can expect others to value you too. But it's a tough journey. Think carefully. Ask the right questions. Don't feel ashamed of asking for help, because you will need it.
Enough with motivational phrases. I want to thank everyone here for all the words of support and also this forum for the fantastic people it enabled me to connect with, both online and in real-life, such as LAGrowin, short2tall, OverrideYourGenetics and others who I met through private messages. This community is incredible, and this forum is a fantastic source of information, so take the most out of it. As I'm moving on with my life, this story will slowly fade away for me but will lie here so others can benefit from it. I'm focusing on other things in my life now, and will probably show up very rarely, but feel free to PM me whenever you want, since I get notified via e-mail, and I'll be more than willing to answer any questions you may have. I'll probably post an update in about six months, after my rods removal surgery. Until then, I wish an incredible journey to all of you who will go through it.
I'll end this post answering the question that I most get asked: do I regret? No, I don't, not a single part of it, not even the wrong things I did. I don't regret it because I sincerely believe the outcomes of it went beyond the judgments to an actionable follow-up by many people that might, indirectly, have saved and will save lives. Take CPR classes :-)
And as promised, here's a before/after comparison pic with a friend of mine who's 5'7: https://imgur.com/a/RC9IasC (https://imgur.com/a/RC9IasC)
Over and out.
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I wish you all the best. Is it helpful to stretch before surgery? ;D
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I wish you all the best. Is it helpful to stretch before surgery? ;D
Hey Chinese Actor. Definitely if you have been doing stretch exercises for a long time, so your muscles are more loose and it'll get tighter later than what usually happens with people that don't stretch. However, stretching a month or two before the surgery won't do much of a difference, but it won't kill as well. I didn't do any stretching and I recovered just fine and regained all my flexibility :)
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Thank you for that final post.
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Hi all,
As promised, I'm making one last update after removing the rods. My surgery was last week, April 4th, 1 year after putting those rods on my legs (April 5th 2018).
The surgery went great. I was already walking without assistance on the same day. When walking I would feel a minor pain on the hips but that's it. I went to my Airbnb which was on the second floor in a building with no elevator, and I could go up and down easily. It honestly feels that my flexibility is already better -- it was like 90% before and now it feels like 95%. Maybe the rods were indeed a limitation factor. Rest assured that being 90% or 95% instead of 100% don't affect absolutely anything in my life. When I estimate those numbers it's basically based on my ability to touch my toes with my fingers. Most people with or without the surgery wouldn't have it 100% anyways.
Today is my 10th day post-op and the pain (if I can even call that pain after what I've been through last year) is all gone. I'm back to my routine, already got back to the gym yesterday for upper body training and already returned to work. The only limitations he gave me is that I can't run for the first 6 weeks, and can't do sports such as soccer or basketball for the first 3 months. After that there is no limitation. Even though right now it feels I can run and do anything, I'll follow what he said and will wait a couple more weeks before getting back to lower body weight lifting.
This surgery is 100 times easier than the first one, but try to do it 1 year or 1.5 year after the initial procedure. Dr Mahboubian did two rod removal surgeries on the same day. I was the first one on that day, scheduled for 7:30am and the other was scheduled for 10am. On my follow up appointment he said he was glad that I went first, because my surgery only took 45 minutes on each side, but the other person had the rods for 4 years, it took 2 hours on each side and the surgery was way more complicated (he didn't give much more details besides for that).
I'm happy I'm over with this part of my life and it has already started to fade away from my mind. I barely think about it and I've moved on with every part of my life. I'm even married now and I honestly couldn't be happier.
I hope this journal will help future CLL'ers and now this is the real final post. Good luck!
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Hi all,
As promised, I'm making one last update after removing the rods. My surgery was last week, April 4th, 1 year after putting those rods on my legs (April 5th 2018).
The surgery went great. I was already walking without assistance on the same day. When walking I would feel a minor pain on the hips but that's it. I went to my Airbnb which was on the second floor in a building with no elevator, and I could go up and down easily. It honestly feels that my flexibility is already better -- it was like 90% before and now it feels like 95%. Maybe the rods were indeed a limitation factor. Rest assured that being 90% or 95% instead of 100% don't affect absolutely anything in my life. When I estimate those numbers it's basically based on my ability to touch my toes with my fingers. Most people with or without the surgery wouldn't have it 100% anyways.
Today is my 10th day post-op and the pain (if I can even call that pain after what I've been through last year) is all gone. I'm back to my routine, already got back to the gym yesterday for upper body training and already returned to work. The only limitations he gave me is that I can't run for the first 6 weeks, and can't do sports such as soccer or basketball for the first 3 months. After that there is no limitation. Even though right now it feels I can run and do anything, I'll follow what he said and will wait a couple more weeks before getting back to lower body weight lifting.
This surgery is 100 times easier than the first one, but try to do it 1 year or 1.5 year after the initial procedure. Dr Mahboubian did two rod removal surgeries on the same day. I was the first one on that day, scheduled for 7:30am and the other was scheduled for 10am. On my follow up appointment he said he was glad that I went first, because my surgery only took 45 minutes on each side, but the other person had the rods for 4 years, it took 2 hours on each side and the surgery was way more complicated (he didn't give much more details besides for that).
I'm happy I'm over with this part of my life and it has already started to fade away from my mind. I barely think about it and I've moved on with every part of my life. I'm even married now and I honestly couldn't be happier.
I hope this journal will help future CLL'ers and now this is the real final post. Good luck!
Great post and congratulations - it's clear that you do not regret doing this! All the best
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Hi Fallen!
Congrats on rounding off your journey! I was reviewing your diary and although you had a traumatic experience, I must say, the speed at which you returned to walking with a reasonable Gait might be a record on here despite the fact that you were on the old nails. I'm glad that all worked out so well and congrats again!
All the best.
IFS
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Fallen, fico feliz em saber que você veio do Brasil, é um bom sinal..
Desejo tudo de bom
:)
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Bumping an old thread. Must read thread. Don't give a fk.
general disclaimer: If you're having sleep problems while LL, DO NOT take opioids and benzos to sleep better. I REPEAT, DO NOT take them together to sleep, more or less take opioids at all for anything but relieving intense pain.
Near death experience in this thread. Fortunately a good outcome, but there's lots to be learned.
Fallen774, God bless you. Don't come back to this forum, cause you'll be living life. Congratulations man.
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Bumping an old thread. Must read thread. Don't give a fk.
general disclaimer: If you're having sleep problems while LL, DO NOT take opioids and benzos to sleep better. I REPEAT, DO NOT take them together to sleep, more or less take opioids at all for anything but relieving intense pain.
Near death experience in this thread. Fortunately a good outcome, but there's lots to be learned.
Fallen774, God bless you. Don't come back to this forum, cause you'll be living life. Congratulations man.
Thank you for the note.
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Just gonna bump this again for those who might go overboard with the sleeping pills/pain relief.
Near death experience. Everything is good though
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Just gonna bump this again for those who might go overboard with the sleeping pills/pain relief.
Near death experience. Everything is good though
ghkid what a comeback, you are making order everywhere, glad to see you again
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ghkid what a comeback, you are making order everywhere, glad to see you again
Haha good to see you again and everyone. Sorry for spamming every thread. It'll settle down soon.
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Bumping an old thread. Must read thread. Don't give a fk.
general disclaimer: If you're having sleep problems while LL, DO NOT take opioids and benzos to sleep better. I REPEAT, DO NOT take them together to sleep, more or less take opioids at all for anything but relieving intense pain.
Near death experience in this thread. Fortunately a good outcome, but there's lots to be learned.
Fallen774, God bless you. Don't come back to this forum, cause you'll be living life. Congratulations man.
Did some one jus die
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Did some one jus die
No, he is alive. He almost died. But he is alive.
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Still one of my most favorite diaries. Ever. Bumping because this is the LL Forumorum that I love.
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So...
* It's been 6 years since my LL surgery;
* In 2 months, it'll be 6 years since my near death experience reported in this topic;
* Finally, it's been 5 years since my rods removal.
For the past 2 or 3 years I had completely detached myself from the reality that this was once a thing I did in my life. Social anxiety? Gone. Being a constant target of jokes? Gone. Feeling more confident? Definitely a lot more.
I don't know if I should create a different topic for this or not but consider this post an AMA. Make sure to read the topic and understand the full story though :)
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@fallen774
Thanks for your sharing. I was glad that you were recovery so good!
Your experience is really useful for me.
Thanks again.
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Thank you for sharing!
1) Do you still wear lifts?
2) How has your experience with women changed?
3) Did anyone notice?
4) Would you ever go back for tibias?
5) What advice would you have, apart from the drug interactions, for someone going for femurs?
6) Any thoughts on the new weight-bearing nail?
Thanks again - your journey really inspired me.
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I'm glad my diary was useful for you @li2028 and @ThirdSpace. I hope everything goes well if you decide to go through this :)
As for the questions:
Thank you for sharing!
1) Do you still wear lifts?
2) How has your experience with women changed?
3) Did anyone notice?
4) Would you ever go back for tibias?
5) What advice would you have, apart from the drug interactions, for someone going for femurs?
6) Any thoughts on the new weight-bearing nail?
Thanks again - your journey really inspired me.
- No, it used to hurt my calves after a while. My goal was not to be considered tall, just not to be considered too short.
- Hahaha sorry to break to you dude, but short straight men are not the only ones with height issues. My experience with relating to people I feel attracted to did change, yes :) (and once in a while women hit on me and I make out for fun)
- Yes. No one from the Bay Area, where I had been using lifts since I moved there. But my school and university friends from Brazil did notice. Some of them knew because I told them, some of them just were straightforward like "oh my God, you are taller". But they couldn't figure out what I did.
- Honestly? Yes. Not now that there has been a recall for the Precice Stryde (the 3rd Precice generation), as I did my femurs with the 2nd generation and being strained to a wheelchair demands a lot of support. I don't want to be unproportional though, so I'd restart doing my research on proportions.
- A few tips:
a. Don't be crazy to think that 1 month and a half away from work is enough for you to go back to work. That's what some doctors will tell you to convince you to do the surgery. It was a hassle having my mom drive me to work as I didn't think things through and she had to make an effort of folding my wheelchair, putting it on the trunk of the car, then taking it away at my workplace and doing the same thing when picking me up. I realized months later that I could had taken a much longer break from work.
b. Try to stay as long as possible in the city you do the surgery as the surgeon will often refer you to PTs that know what they are doing and you will need a lot of physical therapy. Also, moving away means you'll have to find yourself a place to do the x-rays every few weeks and send them to your doctor to know if you should increase or decrease the speed of the lengthening.
c. Have support from someone you trust that can stay with you for at least 3 months (maybe less with the new method that allows you to be more independent).
d. The first 1 to 2 weeks are terrible. You'll have constipation, you'll face a lot of pain, and your legs will be extremely swollen. That's normal. - My surgery was in 2018, a year before the new weight-bearing nail came out. From recent research, I saw there has been a recall on it. Maybe you know better. But they are developing a new nail called Precice Max which should come out in April this year. I wouldn't trust any doctor using Precice Stryde. Here's a summary you can easily find on Google: "In February 2021, NuVasive Specialized Orthopedics voluntarily recalled its Precice Stryde, Precice Plate, and Precice Bone Transport systems from the U.S. market due to biocompatibility concerns. The recall was issued after some patients experienced pain and small bony abnormalities between the telescoping nail segments. The bony abnormalities were usually small erosions on the inner bone around the nail segment. The FDA has expressed concerns about both stainless steel and titanium-based Precice devices."
Hope that helps!