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Author Topic: 8cm on femurs - Dr. Mahboubian  (Read 14010 times)

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concernedmom

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #62 on: June 15, 2018, 10:22:48 PM »

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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fallen774

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #63 on: June 16, 2018, 05:55:51 AM »

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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before: 5'5.5
now: 5'8.2 (+2.7")
surgery date: April 5th, 2018
stopped lengthening: June 20th, 2018
Dr. Mahboubian, North Hollywood

fallen774

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Re: Large bruises
« Reply #64 on: June 16, 2018, 06:20:00 AM »

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:



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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before: 5'5.5
now: 5'8.2 (+2.7")
surgery date: April 5th, 2018
stopped lengthening: June 20th, 2018
Dr. Mahboubian, North Hollywood

fallen774

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #65 on: June 16, 2018, 06:43:20 AM »

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!
« Last Edit: June 16, 2018, 07:03:34 AM by fallen774 »
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before: 5'5.5
now: 5'8.2 (+2.7")
surgery date: April 5th, 2018
stopped lengthening: June 20th, 2018
Dr. Mahboubian, North Hollywood

totallyred

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #66 on: June 16, 2018, 04:24:43 PM »

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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fallen774

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #67 on: June 16, 2018, 05:17:09 PM »

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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before: 5'5.5
now: 5'8.2 (+2.7")
surgery date: April 5th, 2018
stopped lengthening: June 20th, 2018
Dr. Mahboubian, North Hollywood

Purushrottam

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #68 on: June 16, 2018, 08:35:56 PM »

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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Had LL in Sept 2017 with Dr. Paley.
Starting height: 168.5 cm (5'6.5"); Ending height: 175 cm (5'9")
http://www.limblengtheningforum.com/index.php?topic=4823.0

OverrideYourGenetics

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Re: Large bruises
« Reply #69 on: June 17, 2018, 01:50:00 AM »

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. 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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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

totallyred

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #70 on: June 17, 2018, 05:48:15 AM »

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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OverrideYourGenetics

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Going to work in a whelchair
« Reply #71 on: June 17, 2018, 07:28:58 PM »

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 under the desk to help with knee flexibility and range of motion?
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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

patientprivacy

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #72 on: June 17, 2018, 09:08:30 PM »

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 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

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Re: Going to work in a whelchair
« Reply #73 on: June 21, 2018, 11:27:40 PM »

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 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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before: 5'5.5
now: 5'8.2 (+2.7")
surgery date: April 5th, 2018
stopped lengthening: June 20th, 2018
Dr. Mahboubian, North Hollywood

fallen774

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #74 on: June 22, 2018, 12:02:26 AM »

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.
« Last Edit: June 22, 2018, 01:38:51 AM by fallen774 »
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before: 5'5.5
now: 5'8.2 (+2.7")
surgery date: April 5th, 2018
stopped lengthening: June 20th, 2018
Dr. Mahboubian, North Hollywood

fallen774

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #75 on: June 22, 2018, 12:33:37 AM »

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.
« Last Edit: June 22, 2018, 01:44:08 AM by fallen774 »
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before: 5'5.5
now: 5'8.2 (+2.7")
surgery date: April 5th, 2018
stopped lengthening: June 20th, 2018
Dr. Mahboubian, North Hollywood

totallyred

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #76 on: June 22, 2018, 06:57:39 AM »

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....
« Last Edit: June 22, 2018, 08:46:39 AM by totallyred »
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myloginacc

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #77 on: June 22, 2018, 10:18:30 AM »

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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Yes I do want to add, before doing this surgery, ask yourself if you have optimized your life to the fullest extent possible (job/career, personality, etc).

totallyred

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #78 on: June 22, 2018, 11:14:44 AM »

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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fallen774

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #79 on: June 24, 2018, 01:29:49 AM »

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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before: 5'5.5
now: 5'8.2 (+2.7")
surgery date: April 5th, 2018
stopped lengthening: June 20th, 2018
Dr. Mahboubian, North Hollywood

fallen774

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Gait Post-Lengthening
« Reply #80 on: June 26, 2018, 02:44:54 AM »

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
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
« Last Edit: June 26, 2018, 03:21:17 AM by fallen774 »
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before: 5'5.5
now: 5'8.2 (+2.7")
surgery date: April 5th, 2018
stopped lengthening: June 20th, 2018
Dr. Mahboubian, North Hollywood

FormerKidd

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Re: Gait Post-Lengthening
« Reply #81 on: June 26, 2018, 02:59:24 AM »

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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fallen774

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Re: Gait Post-Lengthening
« Reply #82 on: June 26, 2018, 03:05:44 AM »

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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before: 5'5.5
now: 5'8.2 (+2.7")
surgery date: April 5th, 2018
stopped lengthening: June 20th, 2018
Dr. Mahboubian, North Hollywood

totallyred

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Re: Gait Post-Lengthening
« Reply #83 on: June 26, 2018, 11:25:33 AM »

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
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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OverrideYourGenetics

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Walking with STRYDE
« Reply #84 on: June 27, 2018, 04:46:26 AM »

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.

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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

totallyred

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Re: Walking with STRYDE
« Reply #85 on: June 27, 2018, 06:44:03 AM »

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.



Did you post any pic/video in the post? If you did it's not visible/opening.
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Time4LL

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #86 on: June 27, 2018, 12:27:09 PM »

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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myloginacc

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Re: Gait Post-Lengthening
« Reply #87 on: June 27, 2018, 10:34:39 PM »

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
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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Yes I do want to add, before doing this surgery, ask yourself if you have optimized your life to the fullest extent possible (job/career, personality, etc).

jwjw1969715

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #88 on: June 28, 2018, 03:20:03 AM »

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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fallen774

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #89 on: June 28, 2018, 05:16:57 AM »

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.
« Last Edit: June 28, 2018, 05:51:40 AM by fallen774 »
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before: 5'5.5
now: 5'8.2 (+2.7")
surgery date: April 5th, 2018
stopped lengthening: June 20th, 2018
Dr. Mahboubian, North Hollywood

fallen774

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #90 on: June 28, 2018, 04:15:56 PM »

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: 5'5.5
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surgery date: April 5th, 2018
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Dr. Mahboubian, North Hollywood

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #91 on: June 28, 2018, 05:36:16 PM »

Before and after comparison pics?


Good to hear everything is going well
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myloginacc

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Re: 8cm on femurs - Dr. Mahboubian
« Reply #92 on: July 03, 2018, 12:00:34 PM »

Fallen, could you go a bit more in detail about this?

Quote
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), 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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Formerly myloginacct; had issues with my login account.
Yes I do want to add, before doing this surgery, ask yourself if you have optimized your life to the fullest extent possible (job/career, personality, etc).
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