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Author Topic: HelloThere's Precice 2.0 Femurs with Dr. Rozbruch (operation date 3/20/14)  (Read 39813 times)

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HelloThere

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Hi Sweatpants,

Things are going well.. I'm starting to move my legs without the help of my arms and my right leg is doing spectacularly. My left leg on the other hand is still hurting very badly. With spikes of 10/10 on the pain scale. Right leg is about a 0-5/10 max.

I'm now at this place we rented for the next 3 months and I'm taking 2 Norcos every 4 hours 7.5mg/325mg.

I'm going to post in your thread and see how you're doing. :)
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HelloThere

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Tried going to the bathroom earlier with my brother's help... definitely one of the hardest/most painful things I've had to do so far. I'm going to try to see if I could just hold it in for a few more days, hopefully I'll be healed enough by then for it to not be as painful.

I've tried doing a little bit of weight bearing today, still painful even just standing there with the walker... however, my in-bed PT stretches are definitely paying off. My flexibility is coming back big time and I can now hug my thighs to my chest, with just a bit of pain. Legs also hurt unequally, with the left being quite painful and still a bit swollen, while my right one is barely hurting at all.
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HelloThere

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Lengthened with the Precice 2.0 device yesterday for the first time. It wasn't painful or uncomfortable, in fact, I m couldn't tell whether the nails were lengthening or not. This morning however... Different story. All the lengthening yesterday (1.32mm) has my made legs incredibly sore today. I could barely get to the side of the bed to pee in the bottle, it was really bad. I'm laying here now, working on getting some stretches in. In about 1 hour I'll be taking my lovenox (blood thinner) and my prescribed vitamins.
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TRS

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Hello,once again Hellothere
Congratulations on starting the distraction phase! How is your pain management, do you feel pain while on painkillers? I always read that the first two weeks is always the hardest so hang in there bro, days will go by quickly and you will be a taller man in no time  :) BTW how flexible were you pre CLL and update us on whether any prophylactic release surgeries were performed on you once you get the chance to meet Dr.Rozbruch.
Wish you all the best!!
« Last Edit: March 26, 2014, 11:38:01 AM by TheRisingShorty »
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Sweatpants

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Hey HelloThere,

Almost a week, yeay!  :D

How is it going? How the lengthening, still have this soreness after?
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HelloThere

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Thanks a lot for checking in RisingShort & Sweatpants! I really appreciate the kind words, you guys always my bring my spirits up!

Pain was really bad on the 3rd and 4th day post op. However, I emailed in and Dr. Rozbruch's assistant gave me a new prescription for Oxycontin, which I can take once every 12 hours and also combine with my Norcos. Ever since then, I've been fine and I seem to be getting a lot stronger/be able to do more things on my own.

I've been reading more diaries on old forum , as it seems that theirs are more in number and more established, since I'm thinking their forum has been around for a lot longer. I haven't really updated much here since there's nothing new going on for me.

Pain has been managed very well with the introduction of the new drug and the days are going by fairly quickly because I'm either reading, stretching, or sleeping most of the time. I'm only really sore in the mornings and after I lengthen with the Precice 2.0 device.

By end of today, I should have lengthened 4.96mm, about half a centimeter. My operation was on the 20th of this month and I started lengthening on the 24th at 1.32mm per day. Dr. Rozbruch said I'll be lengthening 1.32mm per day for four days, then dial it down to 1mm/day. I have an appt. to see him on the 3rd of April, so if things are going well, I will ask him if it'd be ok for me to continue lengthening more than 1mm like Dr. Donghoo Lee's patients are doing in Korea. If I could continue 1.32mm per day instead of 1mm per day, I'd get to finish my distracting in less than 50 days vs. 65 days.

My fear right now is that one leg my not be lengthening as much as the other or early consolidation of the bone... which would lead to another surgery. I'll keep you guys posted as anything new goes on, as well as after my appointment with the doctor on the 3rd of next month.

As for the release, I'm not sure whether he performed any on me, but I read that doing those would permanently hamper your athletic abilities by 10-15%? I'm not sure how valid it is, I only just read it in one of the old forum  diaries. I was flexible enough to keep both legs straight and touch the floor with the palm of my hand. I also did a lot of weightlifting and could squat 265lbs and do around 295lb dead lifts, so my legs were built pretty well. I'm making sure to press the Precice down down on my leg, in case my muscles are interfering with the magnet's ability to interact with the rod.

Let me know if you have any other questions! I'll be checking in on you guys in your threads as well (Rising, you won't be doing your surgery till later, right?)
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Sweatpants

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Hey,

Sounds like a normal recovery. I take oxycontin once in 12 hours as well since my first surgery, I agree it helps a lot.
I know by my first surgery and also by general statistics from all diaries and people's stories, first two weeks are really hard and pain is really strong, but after it is getting considerably better.
I was off the wheelchair by the end of the third week and was moving around with a walker. Now I am waiting for it to happen again.

Feel good!

Cheers
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BilateralDamage

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Doctors are very divided on ITB releases.  Dr. Paley is a strong proponent of leg lengthening patients doing them while Guichet is very against the idea entirely.  Dr. Lee in South Korea is also against ITB releases (and the one who quoted the 10% - 15% reduction in athletic ability) but a few diaries from his patients here stated that they had lengthening complications with the a PRECICE 2.  I personally believe releases are a good thing because the soft tissues are going under immense strain when lengthening any amount.  But I'm curious to hear Dr. Rozbruch's take on it.

Btw thanks for keeping such an excellent an detailed diary so far!  Stay strong, you're in the thick of the pain right now but sooner than later the pain will seem a distant dream to you. :)
« Last Edit: March 27, 2014, 01:15:14 AM by BilateralDamage »
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HelloThere

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@sweatpants thanks, same with you!!!

@bilateraldamage thanks for the kind words bud, I'm doing my best! I emailed him today, hopefully he'll get back to me with a detailed response, if not, I will ask him in person next week.

The pain has definitely gone down a lot on day 6 post op... I feel that by next week I should be walking around with the help of a walker. I hear a lot of people saying that weight training and stretching could increase the pain that you experience during the surgery... however, I saw that Dr. Guichet was so adamant about only taking on patients who have trained and met certain requirements that I felt that it must've been for good reason. Even if I did experience more pain, it was well worth it because I feel like I'm healing very fast, compared to a good amount of the diaries I've read. I'm also lengthening 1.32mm per day. If Dr. Rozbruch says it's ok, I'll be continuing to lengthen that amount, instead of going down to the standard 1mm that he normally recommends.

Once you do your surgery, I highly recommend asking for an extra prescription of pain killer that would complement the one that they prescribe you initially at the hospital... I think it's been a game changer for me because it allows me to really push the limits of how much I can stretch, allowing me to get back to full flexibility and build strength faster.

Please let me know if you have any questions, I can't wait to see you get started.

I apologize if my responses are redundant or don't fully make sense, I'm constantly on pain killers.
« Last Edit: March 27, 2014, 02:37:57 AM by HelloThere »
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BilateralDamage

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I'm glad to hear your pain is going down.  ;D

Were there any reasons that you didn't consider other doctors? (like Dr. Paley, Guichet, etc.)  Rozbruch is a great doctor but Paley definitely surpasses him in CLL experience.

How tall are you originally?  Also how old?  I'd also love to hear about your story and why you're doing such a drastic surgery like LL.

I can't wait to join you with LL 2 months from now.  In a weird way, I'm envious of the pain you're in.  :o  It's going to be so worth it for all of us!
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HelloThere

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He is indeed conservative when it comes to weight bearing, but I should be ok as long as I put a majority of my weight on my arms, I think. I'll be speaking with him and getting back to you with details about that!
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TRS

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He is indeed conservative when it comes to weight bearing, but I should be ok as long as I put a majority of my weight on my arms, I think. I'll be speaking with him and getting back to you with details about that!

Thanks! Keep us updated :)
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HelloThere

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Today was the first day I woke up without pain. I know it's not the painkillers because I slept for 8 hours and normally when I wake up I'd be asking my little brother to bring the Norcos. However, even though there was no pain, I was very stiff and stretching my legs did bring minor pain due to having to loosen up the muscles. I really believe that stretching plays a HUGE role in recovery. I'm going to attempt to stretch for 15-30 minutes every 45-60 minutes now.

My technique right now is to stretch a muscle up to the point that it hurts, hold it in that position for a few minutes, then try to push further... usually you should be able to. It'll be sore and tired, but you'll wake up feeling amazing! My fear now is that the Precice device isn't stretching my muscles as much as I think it is (some other patients seem to be having the same problem in Korea), so I really am anxious and excited to see Dr. Rozbruch to check my progress.

I read in some diaries that patients' legs would start separating as they lengthening more. One thing I'm noticing for myself is that my legs are actually coming together. When I first met with Dr. Rozbruch, he told me that I had a varus deformity (one leg is more bowed than the other?) and a rotational deformity. Therefore I believe that with this operation, I'll be knocking out three birds with one stone... height, bow leg deformity, my rotational deformity. If you can, do ask the doctor to check if your legs could use any sort of "fixing". They made all those corrections for me at the same time that they inserted the rod, so I'd like to think that I am quite lucky!

If you have any questions, do not hesitate to ask. By end of today, I should be around the 6mm mark of lengthening... I started on the 24th.
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BilateralDamage

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You didn't answer my questions. :P

Were there any reasons that you didn't consider other doctors? (like Dr. Paley, Guichet, etc.)  Rozbruch is a great doctor but Paley definitely surpasses him in CLL experience.

How tall are you originally?  Also how old?  I'd also love to hear about your story and why you're doing such a drastic surgery like LL.
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rickybobby

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Amatan was consolidating too quickly and that caused his "malfunction".

Keep a close eye, I wish there was a way to know that your actually distracting other than X-rays.

precice is so painless that you don't know if your lengthening or not...

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HelloThere

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@BilateralDamage

I'm sorry about that, I didn't see your post!

I'm 5'4" originally and I'm 24. I've been called "short" as far as I could remember and it's definitely affected my confidence and caused me to be insecure in certain areas of my life. I know some girls don't care as much for height (or at least they don't voice it), but if I see a taller guy when I'm with a gf, I'll usually have insecure thoughts about them wanting to leave me for the other guy, just because of his height alone. I also close myself off from girls who are my height or appear to be slightly taller because I figure that with heels they'll tower over me... when in reality I'm sure some of them won't mind at all, so it's more a mental issue than anything. Anyway, I figured it's time that I get out of that mindset and do something about all of it, which is why I pursued this surgery. I did a lot of weight lifting, for about a year, before going ahead with this and stretch every single time after a workout to increase my flexibility. Before I came to have my surgery, I was able to squat around 265lbs, dead lift 295lbs, and bench press 175lbs. I could touch my palms to the ground if I tried hard enough with both legs straight. I worked very hard at this because I saw how much Dr. Guichet wanted his patients to be in excellent shape before lengthening and thought it was a great idea that made a ton of sense.

Another thing that really pushed me are my leg deformities, which were brought to light when I saw Dr. Rozbruch for a consultation. They told me that I'd probably come back later either way for surgery, due to the combination of my bow leg, rotational, and flat feet deformities, and that this would delay having operations for joint replacements and things like that by 10s of years. I've always had problems with my lower back/hip and figured that one of my legs might be a little off... so it was nice to confirm my suspicions with a qualified team of doctor/physicians. Knowing that this surgery would also benefit my life in the long-run definitely sweetened up the pot and really pushed me ahead.

@rickybobby

Thanks for letting me know about that. I don't see consolidating too quickly as a problem if you're increasing the amount lengthened to compensate? I'm hoping that my bones are consolidating at a good rate as well, that way I can continue with 1.32mm of distraction instead of having to go down to 1mm. It would speed up things by 15 days, which would be great for me... since I could use that time to heal and get back to as close to where I was before the surgery.

I just emailed Dr. Rozbruch and his team today to see if it'd be possible to have an earlier appointment than April 3rd, that way I will have a better idea of what's going on and if my suspicions are valid before it's too late. I feel like I'm healing way too fast, so it may not be lengthening as much as I think... or maybe I'm underestimating my age and all the training that I did before the operation? I'll find out soon enough.

I have been able to do nearly every stretch in the PT booklet without any help and reach my previous level of flexibility, surprisingly... a few days ago I thought this would've all been impossible, but persistence really pays off and if there's anything to take away from this study, it's that you've really got to push yourself to stretch! Even if you're not doing a lot, just do what you can.

My biggest thing problem are my knees, which appear to be somewhat tighter than the rest of my muscles. I'm massaging them and constantly stretching them now, hopefully they'll get better, but it's nothing too serious.

I'll write a quick summary of the past 7 days for anyone interested:

May 20th - Lengthening surgery. Anesthesia/sedative knocked me right out, felt no pain. Woke up to catheter being put in, body was still numb from anesthesia/sedative/epidural. Ate a ton of food and asked for more. I feel that just gorging is really important because your body is in total shock from what's going on and the food will help provide energy for it to be able to handle what's going on.

May 21st-23rd - Ate a lot of foods, pretty much anything I could get my hands on. Slept a ton. *I cannot stress eating as much as much as much as you can and resting.* Received visits from physicians and doctors who checked in on and me and removed my dressings. They also taught me how to use the Precice 2.0 device which is incredibly simple. I also went to my apartment here in the city on the 23rd.

May 24th - Woke up to a ton of pain, took two 7.5mg Norcos every 3-4 hours. Totally underestimated how bad things got and lost hope as to how fast I could recover. Could barely move my legs and did my best to stretch whenever I could... probably spent most of my time sleeping and a total of 1 hour combined of stretching and moving. Went to the bathroom for a bowel movement for the first time and succeeded, but the weight bearing was hell on Earth. I'm still scared that I bent my nails, since they can only hold 30lbs each, but I believe I should be ok.

May 25th - Woke up with legs tights and pain at all times, so I emailed Dr. Rozbruch's assistant about feeling major pain. They prescribed me with another pain killer, 10mg of OxyContin, which I proceeded to take with the Norcos that I received from the hospital's prescription. Did my best to stretch, but slept most of the day, probably spent an hour or two stretching and the rest laying down/sleeping.

May 26th - Felt a lot better, proceeded to spend more time stretching... probably 3 to 4 hours now? Slept most of the day still.

I'd like to note that each day I had at least 3 meals (each meal was very heavy in protein, moderate in carbs and fat), multiple types of vitamins (multi-vitamin, fish oil, l-lysine, calcium supplement, among others that were given to me by the hospital), a lot of water (drank 4 bottles or so per day), went to the bathroom at least once per day for bowel movement, but multiple times for peeing, lengthened 1.32mm per day with Precice 2.0, and did my best to stretch and move my legs whenever able, I would try to weight bear just a very tiny bit here and there... but nothing crazy.

May 27th - I feel nearly 100%. My legs were tight when I woke up, but I just stretched them and massaged them and everything was ok, there wasn't really any pain from the femurs being broken. I can pretty much do everything myself now... transfer myself to the wheelchair without help, go to the bathroom, go to the kitchen, things like that. I'm confident that I could do a bit more walking with the help of the walker... but I don't want to take the risk due to low weight bearing ability from my tiny rods.

The recovery today was so drastic that I actually contacted Dr. Rozbruch for fear that I wasn't lengthening enough and I'm trying to schedule an earlier check-up. I still don't know if that's the case, but I will update the moment I hear back. If I really was lengthening what I thought I was and still able to recover so quickly, I credit it to the major amount of rest, good diet, and stretching that I was able to do. When I first started my lengthening I thought it would've taken me at least 1 month to do what I'm currently doing now. I've also reduced my pain killer dose by about half and feel perfectly fine. Only pain is from the soreness or muscles being tired from me working them/stretching them.

If it was all a sham, then I plan on doubling my efforts at stretching, as well as increasing my lengthening with the Precice to properly lengthen my legs. I was really disheartened over the past few days to see that the device malfunctioned for some patients and was not as effective as they thought. I don't understand how it couldn't have been corrected by increasing the amount lengthened to combat the bone consolidation... so if anyone could explain it to me, I'd really appreciate it. I've been on pain killers the whole time, so I don't feel like my brain is working at full capacity right now. I'll be re-reading Amatan's diary on old forum  to see if there's anything I can learn.. now that my head is clearer today with the reduction in pain killers.

If there's anything I missed, please let me know. I welcome all and any questions. Thank you so much for your support, I look forward to keeping you all updated!
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BilateralDamage

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You sound like the most ideal candidate for LL I've seen so far.  Really impressive with the amount of stretching and muscle building you did pre-surgery and how dedicated you are so far post-op.

The fact that you can't tell if you're pre-consolidating is a huge worry (really push for that follow-up with Dr. Rozbruch).

Questions:
  • Why did you pick Dr. Rozbruch over all the other options?
  • Did you try to get your insurance to cover any costs? (due to your deformities)
  • How tall is your brother?  Are your parents okay with you doing this surgery?
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HelloThere

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Your kind words mean a lot to me BilateralDamage and I really appreciate it! I made sure I put as much work in as I can now, so that everything goes smoothly... so that later on I won't have to put in as much work if it all went wrong and there were complications.

I just confirmed the new appointment time with his secretary, it'll be on the 31st, only 4 days away instead of 7... I'll keep you updated and let you know exactly what's going on!

1. I picked Dr. Rozbruch because I spent a good amount of my time researching and making sure that he was a qualified doctor to be able to handle a surgery like this (most of what I could find was through articles or his website/HSS' website). I found that he had awards and honors for being a respected and great physician, and he was also operating out of HSS, one of the most prestigious orthopedic hospitals in the country.

The thing that sealed the deal was my consultation with him and his team, who are all excellent people and willing any questions I had. Dr. Rozbruch was very realistic, relayed as much information as he could from what he saw on my x-rays, and made sure I knew exactly what I was getting into and what I was getting out of it. Not once did he try to push me to do the surgery with him specifically. If anything, I felt like he was a good doctor who tried to provide me as much information as possible and if I wanted to go with him then I could, if not, I could've gone with another doctor and I'm sure he would've still helped me as much as he was able. *I paid for his consultation, so I have no doubt that he wanted to provide me as much as he could for what I paid* His responses were very quick via email and he did not have any problems speaking with me on the phone.

That's why I went with him.

2. My insurance did not cover any part of this operation, unfortunately. We attempted to contact them and have them cover it partially, but they don't cover anything "out-of-network". Upon learning this, Dr. Rozbruch actually reduced his fees, so that I would not have to pay so much. However, it still sucked because I had to pay for everything out of pocket... but if I had to do it again and he didn't lower his fees, I'd still pay every penny (I'll know for sure once this is all said and done with).

3. My brother is 5'8". I haven't told them that I'm doing this surgery because I know they'd worry and I didn't want them to. I'll explain to them everything once I get back. I'm not very close with them, which is why I didn't feel that I needed to... I actually haven't really lived with them since I was around 14 and have been independent ever since then.

Thanks for the questions, I enjoyed answering them!
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HelloThere

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"To cope with the pain, I've gone from lengthening 0.5mm 5x per day to 0.25mm 10x per day. I still feel pain between each lengthening, but it isn't crippling pain the way doing 0.5mm was.  I usually split the lengthening even more by lengthening 0.12-0.13m each time, taking a 5 minute break to massage my legs, and then lengthening the rest.  This lets me avoid most of the pain, which seems to have subsided from yesterday.  "

This is from Amatan's diary with the Precice 2.0 device with Dr. Donghoon Lee on old forum ... I wonder if he means he's doing 0.5mm 5x per day PER LEG? That would be insane. 2.5mm per leg is nearly double what I'm currently doing and I'm still feeling tightness. I can only imagine what it would feel like.. could this be why he was having problems with leg pain and stiffness? Still doesn't explain why the device had such lengthening discrepancies though, hopefully I'm not having the same problems with my Precice 2.0 rods.

I was told by Dr. Rozbruch that I should be pressing the device down to get as close to the rod as possible, since I have muscular thighs. Amatan also mentioned that he had more muscular thighs as well, so the problem could've been due to the magnet lengthening device not interacting with the rod somehow. I'll see if that's an issue with me when I see Dr. Rozbruch on the 31st!
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HelloThere

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Managed to hop on the exercise bike today for about 15 minutes -- not sure what's the deal with the machine, but it appears to be set on some sort of default resistance... which tires me out very easily. Anyway, I feel that it'll play a big part in my recovery, as the motion and slight weight bearing will help build back some of my strength to continue walking again. My legs are insanely sore today from the workout and all the stretching/PT yesterday... so I may just rest for a couple days, while continuing to do stretching and lengthening, but no PT/biking for the next couple of days in order to heal.

I went from around 6-10 norcos a day + 2 oxycontin to just a single oxycontin when I woke up... hopefully it'll last me till end of day, but the pain has completely gone away. Only thing left is the soreness of my legs from all the activity.
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alps

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You're lucky to have a brother who's helping you through this. It's really awesome he can empathize with you.
Btw, how old is he?
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HelloThere

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@Short_and_depressed I totally agree with you! He's taken better care of me than all of the nurses over at HSS... waking up at all hours to help me out and giving me medicine for my pain or emptying my "bathroom bottles". He's 21 as of this year. I would highly highly recommend having someone who cares about you coming along. It won't be super fun for them, but I can say my journey to a healthy recovery has been sped up and kept smooth because of him.
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kneehowguys

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Tangential but,

What is it like to be rich?

What is it like to be rich short and male?
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HelloThere

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I don't consider myself "rich", I suppose we all have different definitions of that, but I do well for myself and pretty much have full freedom... for me, it can be lonely, but that's because I choose to sit inside and work all day, instead of going out and socializing. When I do go out into the world though, I can tell I carry myself more confidently than most other males and I'm a lot more direct when it comes to communicating. I also believe that I have better luck meeting women because of that, even compared to guys taller than me, though I'm not necessarily happier than those guys because I feel like my height is a hindrance.
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Cooper

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  • If it was easy everyone would do it!!!

Hello, i feel similar. I am very confident and lots of positive energy but the height some how messed me up. Hoping to fix it very shortly :). I am waiting passionately to transform from very short to some what average.
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Starting Height: 160
Gained Femur: 6.9cm (Dr. Paley)
Right Tibia Goal: 5.5/6CM

HelloThere

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Down to two "narcos" (narcotics -- I've been spelling it wrong all along, my apologies) before bed now. I was going through a very slight case of withdrawals, over the past few days, when I stopped my normal dose of two narcos (every two hours) + oxycontin (every 12 hours)... it felt like I was coming down with the flu and there was this odd chill within my bones.

The pain from the operation has pretty much gone away, all I'm left with are muscle aches and soreness, which really sucks if I'm trying to sleep, which is why I'm still taking two pills right before bedtime.

I had my check-up with Dr. Rozbruch on the 31st and everything is going perfectly. There doesn't seem to be any sort of premature consolidation of the bones and we've decided to stick to the 1mm/day schedule. I did request that we speed up the lengthening and the doctor told me that even if I do finish lengthening faster, it doesn't necessarily mean my bone will heal faster... if anything I would probably finish around the same time as if I had left it at 1mm/day and I'd be opening doors to new risks by trying to rush the lengthening process.

I've started using the stationary biking machine and it's definitely a good workout and I feel great when I'm on it, but after I get off I'm incredibly sore and my muscles feel very tight. I have a harder time stretching when my muscles are "warm", after biking, than when they're "cold". Either way I will still be biking for about 20 minutes a day and continue stretching throughout the day.
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mediocre

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Way to go HelloThere!

You can also say opioid, less criminal-sounding than narcos.

;)
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BilateralDamage

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Glad to hear you're lengthening properly and feeling less pain :)

Did you get a chance to ask him about ITB releases?
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HelloThere

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Way to go HelloThere!

You can also say opioid, less criminal-sounding than narcos.

;)

Haha thanks for that, mediocre! Opioid sounds way cooler too 8)

@BilateralDamage

Thanks a lot, I feel a lot better now!

I actually sent him an entirely separate email about it and he didn't respond, so it totally dropped from my mind... I'll ask him the next time I see him, which will be next week. Sorry about that, I did tell you that I'd ask him.
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Cooper

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  • If it was easy everyone would do it!!!

Hey BD and hello,
I asked him about IT band and he performs this like dr. Paley. If you do not know dr. R was trained by dr. Paley in Maryland.
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Starting Height: 160
Gained Femur: 6.9cm (Dr. Paley)
Right Tibia Goal: 5.5/6CM

BilateralDamage

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Thanks for finding that out Cooper!  I'm really curious if Hello had it done or not.  And any other sort of releases, since he's a muscular guy.  I'm having both my ITB and biceps femoris being released (a little intimidating, but I'm hoping I'll regain that strength).
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