MEDICAL DISCLAIMER: The information provided on OrthoLength Pro is for educational purposes only and does not substitute for professional medical advice. Always consult with a qualified orthopedic surgeon.
Posted on Mar 27, 2014, 2:42 am
#41

I'm glad to hear your pain is going down.  HelloThere's Precice 2.0 Femurs with Dr. Rozbruch (operation date 3/20/14)

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.  HelloThere's Precice 2.0 Femurs with Dr. Rozbruch (operation date 3/20/14)  It's going to be so worth it for all of us!

Like (0)
Posted on Mar 27, 2014, 2:07 pm
#42

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!

Like (0)
Posted on Mar 27, 2014, 2:19 pm
#43

Quote from: HelloThere on March 27, 2014, 02:07:21 PMHe 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 HelloThere's Precice 2.0 Femurs with Dr. Rozbruch (operation date 3/20/14)

Like (0)
Posted on Mar 27, 2014, 3:22 pm
#44

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.

Like (0)
Posted on Mar 27, 2014, 3:50 pm
#45

You didn't answer my questions. HelloThere's Precice 2.0 Femurs with Dr. Rozbruch (operation date 3/20/14)

Quote from: BilateralDamage on March 27, 2014, 02:42:38 AMWere 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.

Like (0)
Posted on Mar 27, 2014, 4:06 pm
#46

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...

Like (0)
Posted on Mar 27, 2014, 5:09 pm
#47

@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!

Like (0)
Posted on Mar 27, 2014, 5:24 pm
#48

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?
Like (0)
Posted on Mar 27, 2014, 6:12 pm
#49

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!

Like (0)
Posted on Mar 27, 2014, 6:25 pm
#50

"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!

Like (0)

You must be logged in to post a reply.

Related Topics