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[uponly]

Days 9-11, Home

Pain level: 2-5/10

Up until this morning, there was not a lot to note on this diary. The night sweats are mostly gone. The pain is finally "manageable", even without opioids and muscle relaxers (mostly, for the last part, I did take a muscle relaxer this morning as I woke up super stiff and with some pain). My legs are getting stronger. They feel more stable, have more range of motion, do not hurt as much when moving around or transferring from place to place. I do get massive shooting pains in my non-dominant leg, in the upper quad area, during certain movements, that take pain from 0-10 for 1-3 seconds, but these are lessening as well. No fever. Post-anesthesia shakes are gone. Distraction doesn't hurt at all. I can't feel a thing.

(oh - the constant and painful urination did turn out to be a UTI. I got an antibiotics prescription from my PC doctor and two days later, 90% better).

All in all, I'm essentially fine while I'm in bed chilling, I'm making progress on the walker and with my leg strength and mobility, and things are going well. I literally feel as good as I did before surgery most of the time, when I could go outside at any point during the day for my daily 5 mile run (but well, I can't ).

Before I write anything else, I'm going to post something here that Medium Drink Of Water said in another thread:

Doing very little physical activity, lying in bed most of the day, and taking a strong sleeping pill at night can make a big difference.

In my very recent experience, this is the best advice I've seen being given on this forum bar none. The days I push myself beyond what my body can naturally handle, I hurt. If I sleep well at night, I have a great day the next day. If I don't sleep well at night, my morning, at the very least, will suck.

If I'm chilling in bed or on the couch or balcony most of the day and don't try to over-exert, and get a great night's sleep, the next day is golden.

What has worked:

Going to bed early. Being consistent about PT and especially stretching. Moving my PT to the morning/early afternoon. Everyone is different, but before the surgery, I was incredibly active and super fit. If I worked out later at night, I couldn't sleep.

I'm stretching lots. Maybe an extra hour a day. Hamstrings, quads, calves. Just consistently. 5 minutes here, 10 there.

Eating well. Aside from the prescribed supplements, I'm eating healthy foods that are very rich in protein and supplementing with protein shakes and collagen protein in the morning.

Icy Hot. Works surprisingly well for short-term pain relief. Smells awful .

Listening to my body. I'm starting to get a sense of when I'm overdoing it. My legs absolutely tell me . As soon as that happens I'm horizontal in my bed, with a movie or a book.

Mental support from friends and family. I've told a fair amount of people I would be doing this surgery. I didn't really care about being judged, the stigma around this is lessening and literally everyone is getting something done. I was surprised and touched at how supportive they were, from my family and friends to my primary care doc to my girlfriend. People text, check in, send you food, prayers, well wishes, etc. It all adds up to having a healthy mental state.

What hasn't worked:

PT at night. Over-exertion. Staying up late. "Walking" around with the walker longer than necessary.

It sucks, because you want to be ambulatory as quickly as possible. But the exhaust factor is real. Your legs and body are actively healing while you're hurting them by distracting. I'm learning that this is a slow game of patience, where you're fighting your body, knowing that you have to do it all over again the next day.

I've normed to the reality that I won't be able to resume working out, not even swimming, for probably another week at least, and that's OK. All in good time.

On deck:

I'm hunting for a radiology clinic that can take x-rays with the magnet ball (no clue what this is, but it's on my prescription from Dr. Rozbruch). I just got it this morning and need to get my first set of post-op x-rays done next week. I also got approved for hydrotherapy (which my primary care doc recommended) and found a great place that films underwater, has a treadmill, and works on range of motion and gait. I'm beyond thrilled.

My doc also recommended hyperbaric chamber treatments. I have zero experience with this. He loves it. The response I got from Dr. Rozbruch's office:

"Hyperbaric therapy is not necessary, but is also not harmful.  If it is something you want to do, we can support this."

We'll see how much this helps.

Do you need a helper?

During the first 2 weeks, absolutely. And probably through distraction with Precise 2.2. I haven't hired one because of the support system I have. But I could not manage without one. I can shower, bathe, etc. just fine (I bought special chairs, toilet seats with handles, etc.) but where the helper can be invaluable is "can you please get me this thing?". You will have this request 100 times a day and there are things you won't be able to do yourself. If I didn't have my GF and my friends, I would have absolutely hired a helper and anyone considering this procedure should budget for one.

Dr. Rozbruch and his staff:

Absolutely excellent so far. My emails get answers in minutes. Sometimes Erica or someone else calls to go over things via voice to ensure things get understood to the letter. Dr. Rozbruch responded to at least of my emails himself. I've never felt like I didn't have medical expertise in this area when I needed it, or wasn't getting the best possible care.

*****

One thing to add, which I've said before: obviously what I'm going through is personal to me, and everyone will make their own choices. But from what I can tell, your immediate environment will be critical to your success or failure in this procedure. I now know that doing this with Dr. Rozbruch was the right choice for me because I simply would not have been able to stay in Florida in a random hotel room for 3-4 months during distraction. Obviously lots of people do this - they even prefer it. But as you're weighing your options, I firmly believe that more than anything else

"Be where you're going to thrive during this experience"

Is a massive enabler. So if for you that's at a place that has other patients, regimented PT, etc., by all means you should do that. If you will do better on your own with PT and love the comfort of where you are, do that.

Hopefully this weekend continues to be just as boring. Be well. If you have questions, please ask. The reason I'm going to this level of detail is that I intend this to be the most accurate accounting of a Precice 2.2 femur lengthening in every single aspect, so I'm putting in every detail that could one day be helpful to someone else.

[uponly]

Yeah man I'm going to yell at you as well.

Please yell at me, I apparently need it .

Are you coming back for some follow ups or just going to x-ray locally and send him?

3 weeks telemed, three weeks in person. X rays locally if I'm not in NYC. I go to New York frequently, and love the city, but now sufficiently terrified of flying

It's like he's on one extreme end of the spectrum, with Paley being on the other ("forcing" you to stay there while lengthening). I actually wanted to ask Rozbruch about it, it's probably a matter of philosophy but also patient selection.

You're completely right. I do know now I would not have made it with Paley. I would have fled by now, or had someone kidnap me and break me out . Just not a fit from an environment perspective (honestly if that's all you can complain about these two doctors, there are worse things LOL)

Yeah I definitely don't want to do PT with someone not familiar with this surgery. Dr. Marie Gdalevitch shared in her interview with Viktor that her patient broke his nail during PT when he was doing something he shouldn't have done, so need to be really careful here. Just to make sure we're sync'ed here, what do you mean by PT? Because for me PT = stretching

PT are the exercises in the recovery guide, starting on page 22. Some stretching, some strengthening. Stretching at this point is WAYYYY more beneficial for me as well. Whoever works with me, unless Dr. Rozbruch tells them to deviate from that guide, they absolutely won't.

OMG I'd love to do hydrotherapy, but not sure there is a place nearby. I talked to my PT about it, and he mentioned the logistics issue of getting in and out of the pool. Check out this video  from Dr. Donghoon Lee, they have an actual lift for patients. Hopefully you find something that works.

Yeah, I got really lucky. It's right next to my place. They have a 90+ degree pool, treadmill and underwater cameras. I wasn't going to post any videos, but I may do this - they record the sessions. I am more excited about this than literally anything else.

0.2mm at a time 🫡

We got this!!! Hang in there brother. Really appreciate your support, as well as everyone else's.

[hippo60]

If I'm chilling in bed or on the couch or balcony most of the day and don't try to over-exert, and get a great night's sleep, the next day is golden.

Going to play devil's advocate here just to balance it out (for others too). Sure, it's important to listen to your body and if you're tired / in pain etc you should definitely rest. That being said, some people may take this advice "too well" and end up staying in bed most of their day, which is definitely not a good thing. You do want to move around throughout the day and be "active".

Mental support from friends and family. I've told a fair amount of people I would be doing this surgery. I didn't really care about being judged, the stigma around this is lessening and literally everyone is getting something done. I was surprised and touched at how supportive they were, from my family and friends to my primary care doc to my girlfriend. People text, check in, send you food, prayers, well wishes, etc. It all adds up to having a healthy mental state.

That's amazing, glad you're receiving that much support! My experience is somewhat similar as well, been surprised with the level of support from family and friends. I didn't get food and prayers tho, maybe I need better friends?

I've normed to the reality that I won't be able to resume working out, not even swimming, for probably another week at least, and that's OK. All in good time.

Seriously? Next week?

You're completely right. I do know now I would not have made it with Paley. I would have fled by now, or had someone kidnap me and break me out . Just not a fit from an environment perspective (honestly if that's all you can complain about these two doctors, there are worse things LOL)

I totally get it but I guess you can find a decent apartment as well. Someone here actually moved there for the lengthening period so he had a pretty good time.

PT are the exercises in the recovery guide, starting on page 22. Some stretching, some strengthening. Stretching at this point is WAYYYY more beneficial for me as well. Whoever works with me, unless Dr. Rozbruch tells them to deviate from that guide, they absolutely won't.

I'm still slightly confused about the difference but terms aside - you should definitely focus on stretching, and I consider strengthening a bonus. Personally I like to do a "stretching / PT session" (about 30-45m) after every lengthening session, so I do it at least 4 times a day. Also if you didn't get an exercise bike you might want to grab one

Yeah, I got really lucky. It's right next to my place. They have a 90+ degree pool, treadmill and underwater cameras. I wasn't going to post any videos, but I may do this - they record the sessions. I am more excited about this than literally anything else.

I'm so jealous , looking forward to hear about it

[uponly]

Day 15, Home

Pain level: 2-4/10

First, massive thanks to hippo06 for all the tips! I have a massage gun, exercise bike and a lot of knowledge due to my fellow Rozbruch patient!! Waiting for both to arrive and we'll see how it goes.

I've increased my stretching/PT to about 2 hours a day, and am walking around a bit more with the walker. The pain mostly subsides during the day - stiffness and pain set in to a point where they wake me up at around 6:30 AM. I take a Dilaudid and go back to sleep.

Swelling is almost completely gone. My weight is now below pre-surgery weight, including the Precice nails (which weigh about 2 lbs or so total, I would guess). I weighed in at 148 lbs. this morning.

I'm closing in on 1 cm for lengthening. The lengthening process is still painless, I don't feel anything.

Most of the stiffness/soreness is in my quads and lower hamstrings, right above and immediately behind/below the knees. Legs are getting stronger every day. I can move each leg independently off the bed from 0 to 90 degrees, and hold in the air for 3-5 seconds at 45 degrees. This was flat impossible two weeks ago. Range of motion is almost intact from before, and my aim is to keep it there.

Life is definitely starting to normalize, as much as it can with being partially weight bearing. I'm working throughout the day as well. No complaints.

Eating: I'm eating a lot of protein, supplementing with collagen protein and protein shakes, and vegetables/smoothie in the evening. I'm definitely eating more than I was before, and the weight is still coming off.

On Deck: First set of x-rays today, and waiting to hear back from the hydrotherapy place. The x-rays get released to me immediately and I can't wait to see them. Hopefully they show nothing but good things .

[hippo60]

Lots of great signs and progress!
Week 2 feels like a walk in the park compared to week 1

[thankscience]

Any updates?

[Yau]

Any update?

[EndGame]

Any update?

It's been two months. I think it's safe to assume this is an abandoned diary.

[uponly]

It's been two months. I think it's safe to assume this is an abandoned diary.

It's a safe assumption. To be fair, the forum was down for a month. After it came back, I asked the moderators to delete the diary (I still have yet to hear a response).

I just didn't see the level of interest as other diaries, especially those from overseas. I think people are much more interested in cheaper solutions and weight-bearing nails (as much as Precise 2.2 is better than anything else on the market, and is reversible, which is SO valuable), most people just won't opt into this.

I cannot stress enough how important it is to choose the right Dr. and use the right nail, and lengthen to a safe amount and listen to protocols. I shudder every time I see someone say they're lengthening femurs to 10 cm+, no ITB release, walking on Precise during distraction (!!) - someone I know said in Greece they are bending rods left and right because of this. It boggles my mind how people compromise the principles of 1) being safe and walking again and 2) having an outcome with no complications. But - to each their own.

Rozbruch's quote on my bone growth is "A++ on bone growth. Best I've seen in years, you're growing bone like a teenager". The X-rays look outstanding as well.

I hired a great PT who specializes in orthopedics, and whatever insurance doesn't cover, I pay out of pocket. I have PT every day and stretch on my own for about an hour.

I eat a protein and vegetable heavy diet, including collagen and tons of bone broth. I sleep 10 hours a day easy.

I'm at 5 cm and while I've lost flexibility and ROM, I'm still, according to my PT, more flexible than most normal people. He says that if I work very hard I can get my flexibility and ROM back.

I have a lot of nerve pain in my tibias. I consulted with Dr. Rozbruch, my primary care doc (who prescribed gabapentin), my PT and Moshe Roth (famous leg lengthening PT). All said it's normal and it will go away. Moshe said he sees this in almost all of his patients.

I bike 30 minutes a day and am going to start walking in the pool again. I made a great friend in hippo06, and he and I exchange knowledge and tips every day, and help motivate one another.

To end, I'm doing very well. Choosing Dr. Rozbruch was an excellent decision. Under his protocols, and with the help of my primary care doc, my PT, and just being incredibly consistent, I am thriving. I am doing really great minus the nerve pain, which at its highest is unbearable. But I'll get through that and should have no issues getting to 8 cm and recovering well with zero complications.

Hopefully what I wrote to date will help some folks.

[EndGame]

Thanks for restarting. Appreciate your journal. Congrats on the great bone growth!

[Yau]

Well said. Please update regularly.
I agree with u. SAFE is first priority and very important. If I cannot afford with top surgeon, I would rather to give up. Dr R is one of the best of course. If I stay in local after the surgery, can I do PT in HSS? How about the PT in HSS?

[uponly]

Well said. Please update regularly.
I agree with u. SAFE is first priority and very important. If I cannot afford with top surgeon, I would rather to give up. Dr R is one of the best of course. If I stay in local after the surgery, can I do PT in HSS? How about the PT in HSS?

I will not update the diary after this, but wanted to answer the question. I don't know how the PT is at HSS, but I assume very good. HSS is arguably the top orthopedic hospital in the world. I can tell you the level of care you get post-surgery is excellent.

All top doctors will have great PT programs, so you really cannot go wrong with any of the choices. In the US, I think the PT department in Baltimore (with Dr. Assayag) is the best known and renowned. You also have the option to do PT with Moshe Roth, who focuses exclusively on limb lengthening patients.

Whoever you choose to go with, I heavily recommend PT every day. Given that you can afford these doctors and this level of care, the investment in daily physical therapy will be one of the best decisions you can make. My PT is amazing and he tracks my progress, knows how to get me out of pain, where to push, where to slow down, etc. Having daily PT is hands down the best part of my recovery.

Best of luck!!

[Yau]

Would u PM me your PT? I also think that if I do LL surgery, I don’t care to invest in PT.

[thankscience]

Hey man,

Great job with the bone growth!

Do you mind sharing what supplements you're taking (if any)? Also, are you still lengthening at 1mm per day?

[uponly]

Hey man,

Great job with the bone growth!

Do you mind sharing what supplements you're taking (if any)? Also, are you still lengthening at 1mm per day?

OK fine, last entry , this is an important topic.

Starting backwards from lengthening: I lengthen at .8 mm/day. That's Dr. Rozbruch's standard, he does not start at 1 mm. I am currently alternating between .8 and .6 (one day each), due to saphenous nerve pain. I will go back to .8 mm/day every day once the nerve pain dissipates. Dr. Rozbruch likes to slow his patients down to .6 mm/day right about this time, but I don't think he'll do that with me given my bone growth and flexibility/recovery. He's indicated that he's going to keep me at .8 mm/day until the end, unless there's an absolute need to change that.

Regarding supplements/nutrition: it's important to note what I did before the surgery. I came in with excellent blood work results with not a single deviation, and great Vitamin D levels. I did that by having a mostly healthy diet, no drinking, no smoking, exercise, and the following daily supplements:

Vitamin C (500 mg), Vitamin D (5000 iu), Vitamin B complex, Magnesium Citrate (500 mg), Zinc Picolinate (50 mg)

After the surgery, I added:

Calcium Citrate (650 mg, twice a day), Full Spectrum Vitamin K2 (600 mg, twice daily)

And doubled my intake of Vitamins C, D and Magnesium.

I ran my vitamin intake by Dr. Rozbruch and the only thing he added was the Calcium Citrate. I did a vitamin panel about 8 months ago to find out exactly what my body needed. My primary care doc told me to double the C, D and Magnesium during distraction and consolidation, and strongly advocated adding the K2. Apparently that takes calcium and deposits it right where it needs to go, instead of clogging up your arteries.

I also eat a LOT of protein. I weigh 150 lbs, but I consume at least 200 grams of protein a day. It's not that hard, frankly, I'm consistently hungry from growing. I eat very healthy, protein-rich meals, and supplement with vegetable heavy smoothies with whey protein, low sugar protein bars, and LOTS of collagen. I minimize my sugar intake as much as possible.

It's all working great, or has, up to this point. I get new x-rays next week so I hope the crazy bone growth continues.

[Yau]

OK fine, last entry , this is an important topic.

Starting backwards from lengthening: I lengthen at .8 mm/day. That's Dr. Rozbruch's standard, he does not start at 1 mm. I am currently alternating between .8 and .6 (one day each), due to saphenous nerve pain. I will go back to .8 mm/day every day once the nerve pain dissipates. Dr. Rozbruch likes to slow his patients down to .6 mm/day right about this time, but I don't think he'll do that with me given my bone growth and flexibility/recovery. He's indicated that he's going to keep me at .8 mm/day until the end, unless there's an absolute need to change that.

Regarding supplements/nutrition: it's important to note what I did before the surgery. I came in with excellent blood work results with not a single deviation, and great Vitamin D levels. I did that by having a mostly healthy diet, no drinking, no smoking, exercise, and the following daily supplements:

Vitamin C (500 mg), Vitamin D (5000 iu), Vitamin B complex, Magnesium Citrate (500 mg), Zinc Picolinate (50 mg)

After the surgery, I added:

Calcium Citrate (650 mg, twice a day), Full Spectrum Vitamin K2 (600 mg, twice daily)

And doubled my intake of Vitamins C, D and Magnesium.

I ran my vitamin intake by Dr. Rozbruch and the only thing he added was the Calcium Citrate. I did a vitamin panel about 8 months ago to find out exactly what my body needed. My primary care doc told me to double the C, D and Magnesium during distraction and consolidation, and strongly advocated adding the K2. Apparently that takes calcium and deposits it right where it needs to go, instead of clogging up your arteries.

I also eat a LOT of protein. I weigh 150 lbs, but I consume at least 200 grams of protein a day. It's not that hard, frankly, I'm consistently hungry from growing. I eat very healthy, protein-rich meals, and supplement with vegetable heavy smoothies with whey protein, low sugar protein bars, and LOTS of collagen. I minimize my sugar intake as much as possible.

It's all working great, or has, up to this point. I get new x-rays next week so I hope the crazy bone growth continues.

Your answers are useful. Thank u so much.
Dr. Rozbruch is one of the best LL surgeon. After reading your posts, I am considering to have surgery with Dr. Rozbruch. But I want to stay local nearby HSS and have PT sessions in HSS, it seems that the living cost in New York is very expensive and PT sessions in HSS is very expensive too. Right?

[EndGame]

Interesting. I don't think I'd heard of Vitamin K2 before. Quick Google search suggests it's great for bones. Just ordered some. Hope you change your mind and continue posting in your journal. Good luck with your x-rays.

[hippo60]

Dr. Rozbruch is one of the best LL surgeon. After reading your posts, I am considering to have surgery with Dr. Rozbruch. But I want to stay local nearby HSS and have PT sessions in HSS, it seems that the living cost in New York is very expensive and PT sessions in HSS is very expensive too. Right?

Are you living in the US? If so, you're better off not staying in NY. It'll cost you a fortune and honestly it just doesn't worth it. Most of his patients aren't local so he's used to it and perfectly fine with it (with the right patients).

You can do PT at HSS but both Rozbruch & his team don't seem to particularly push it. I'm sure there are great PTs there, but I wouldn't emphasize it. It's very different than someone like Paley where he has a dedicated center and your PT will have tons of experience with LL.

[Yau]

Are you living in the US? If so, you're better off not staying in NY. It'll cost you a fortune and honestly it just doesn't worth it. Most of his patients aren't local so he's used to it and perfectly fine with it (with the right patients).

You can do PT at HSS but both Rozbruch & his team don't seem to particularly push it. I'm sure there are great PTs there, but I wouldn't emphasize it. It's very different than someone like Paley where he has a dedicated center and your PT will have tons of experience with LL.

I am living in Canada. Therefore, I will live nearby the hospital/institute after surgery. Maybe 6 months after consolidation phase. I have 6 months travel visa to stay local. Yes, Dr Paley has a dedicated center and LL PT, and living cost in WPB is so far OK.

[hippo60]

I am living in Canada. Therefore, I will live nearby the hospital/institute after surgery. Maybe 6 months after consolidation phase. I have 6 months travel visa to stay local. Yes, Dr Paley has a dedicated center and LL PT, and living cost in WPB is so far OK.

If you prefer to stay local rather than go back to your home, it's hard to justify Rozbruch over Paley.

[Yau]

If you prefer to stay local rather than go back to your home, it's hard to justify Rozbruch over Paley.

For oversea patients, Dr Paley would be better although Dr R is as good as Dr Paley.

[hippo60]

For oversea patients, Dr Paley would be better although Dr R is as good as Dr Paley.

I wasn't looking to make a generalized rule here. You asked about Rozbruch and PT at HSS, and sounds like you rather stay local, so I gave you my feedback (as his patient).

Dr. Rozbruch is definitely "just as good", and when you're his patient - you're actually interacting with him throughout the entire process. With Paley, you're going to meet him once during consultation and he'll do your surgery (one leg). That's pretty much it. Everything beyond that is done by other people.

[Yau]

I wasn't looking to make a generalized rule here. You asked about Rozbruch and PT at HSS, and sounds like you rather stay local, so I gave you my feedback (as his patient).

Dr. Rozbruch is definitely "just as good", and when you're his patient - you're actually interacting with him throughout the entire process. With Paley, you're going to meet him once during consultation and he'll do your surgery (one leg). That's pretty much it. Everything beyond that is done by other people.

Yes yes
I rather stay local.
After I read many many diaries and talked with LLers. I definitely think that Dr Rozbruch is great and I won’t go wrong with him. But staying  local nerarby HSS is an issue for a foreigner. I don’t know more details about his PT team. I am not sure they have enough experiences with CLL patients. I know Dr Paley is crazy busy, he doesn’t have time to follow up. But his overall package is good for a foreigner. Maybe Dr Assayag is another good choice. He is a good surgeon and the hospital and colleagues are advantages. I am also considering Dr Donghoon Lee.

[sphenopetroclival]

If you have recent imaging data please put it at this thread. Redact any information that could be used to dox you.

[uponly]

Yesterday, my ERC device read "Goal Complete!" after I hit 8 CM on both femurs. Having started at (depending on stadiometer, as stated either here or on another thread) at 178.5 - 179 CM, I measured at 187.3 or so after last lengthening.

It seems that I may have gotten some additional benefit from my legs straightening out a bit by the Precice nails being implanted by a highly experienced Dr. I didn't even know this was possible until Dr. Marie mentioned it in the interview. Either that or the measurement was generous that time of day. Who knows . But I got my 8 CM, I'm incredibly happy, I'm done lengthening and onto consolidation.

My last set of x rays continue to show amazing bone growth. Out of sheer precaution, as one of the nails show a bit of ever so slight bending, Dr. Rozbruch is recommending not progressing from wheelchair/walker for another 4 weeks or so. I'm completely fine with that.

I literally could not have hoped for a better outcome. I have no side effects, no drop foot, duck ass, ballerina foot, nerve pain is gone, legs feel very strong. Absolutely nothing. My ROM (range of motion) has decreased by about 35%, but as I was incredibly flexible before starting lengthening, my ROM is still above that of the average person, according to my PT. He expects me to get it all back in 6-12 months. He expects me to regain close to my previous levels of athleticism, etc. if I work hard (this will take 2-3 years). I'm not really concerned. Fitness wise, he said there will be no difference. I'm giving up some sports and starting others. Everything worked out as it should.

Overall experience: Aside from the first 3 weeks of the procedure (and the first week was sheer hell), I was mostly pain free aside from the 4-5 CM period where nerve pain hit, because I controlled my pain pretty well with the right meds. I flew through the rest of it, especially the last 2.5 cm because I was sped up instead of being slowed down. The lengthening process itself never hurt once, which is the biggest benefit of Pecice aside from the ability to reverse. In fact, I'd choose Precice 100 times out of 100 just for that, and I hear that soon the new Precice full weight bearing nail will take care of the mobility part. It's inconvenient to not have mobility but certainly not to the point where it's a total life blocker. I got around in my wheelchair and walker just fine for the most part. I slept 10-12 hours every day, like a kid growing, and had some of the best sleep of my life. I ate really well - I'm keeping my new diet.

Overall, this is the best life decision I ever made. I feel absolutely AMAZING with my new height, and most important, the proportion of my femurs is no longer so skewed that I'm embarrassed to wear shorts because my femurs are so short. I'm actually more proportionate now than before. I would not change a thing if I had to do it again, and I'm incredibly grateful to have a world-class surgeon like Dr. Rozbruch perform the operation to get to such an awesome outcome.

Parting words for those looking at CLL and hoping for a similar outcome. Below are from my experience and believe to be good advice, but can be taken as my opinion only. Take what's useful to you, leave the rest. I just hope it's helpful.

- Sleep, nutrition, supplements, rigorous PT, exercise bike, pool, sauna. The first 4 are absolute requirements. If you can, hire a PT and/or do PT every day. A list of supplements and the diet I took to get to the bone growth I got is somewhere on this thread. I'm keeping my PT every day for at least another 2 months to ensure I get my gait and ROM back as quickly as possible.

- Don't do this on a budget. Just don't. I know the feeling of wanting to do this so bad as soon as possible. The theorem of "Good, Fast and Cheap - you can only pick two" applies here. Your desired outcome is not height, that's a preferred benefit, it's to safely walk again and get fully back to normal. Do this with an experienced Dr., in a country with a great medical system, where not only the procedure but any complications that arise can be swiftly handled.

Save your money, work a side gig, hustle. I could afford Dr. Rozbruch or Dr. Paley, but I would have done it in LA or Vegas for 70-80K all inclusive if I couldn't instead of Turkey or Greece or wherever. Be smart and give yourself the best and safest possible outcome.

- Be patient and listen to your doctor. This procedure will either teach you patience or put you back in the hospital by breaking a nail. Be OK to sacrifice a few months for a life-changing outcome. Protect your investment, because that's what this is, so you can enjoy it for the rest of your life.

- Have a support group, and do this with a friend. I was honest with people about what I was doing. It's a personal decision, but I didn't see any point in hiding what would become the obvious. I found that people were curious, supportive, mostly non-judgmental, and two are now signed up for surgery. My neighbors and friends have been rooting me on and are throwing me a party .

I could not have done this without the support and friendship of hippo06. Find someone who is doing the procedure and befriend them. We talked every day, encouraged each other, traded tips, got each other through tough times. This is now a lifelong friendship and I'm so grateful I made another close friend. Thank you so much brother for everything you did to help.

Best of luck, and farewell!!

[EndGame]

^The post above is why this forum is going to garbage. I'm about to be a Paley patient and I want to give back to the forum but absolutely not. The moderators are absolutely terrible on this forum. I will be making a diary instead on Cyborg's d which is better moderated.

With that being said, Uponly, please ignore the person above and please know that we are so happy for you and for your salient contribution to this forum. You worked hard for this and I hope you enjoy your height!

Do you have a link to Cyborg's d?

[Yau]

Yesterday, my ERC device read "Goal Complete!" after I hit 8 CM on both femurs. Having started at (depending on stadiometer, as stated either here or on another thread) at 178.5 - 179 CM, I measured at 187.3 or so after last lengthening.

It seems that I may have gotten some additional benefit from my legs straightening out a bit by the Precice nails being implanted by a highly experienced Dr. I didn't even know this was possible until Dr. Marie mentioned it in the interview. Either that or the measurement was generous that time of day. Who knows . But I got my 8 CM, I'm incredibly happy, I'm done lengthening and onto consolidation.

My last set of x rays continue to show amazing bone growth. Out of sheer precaution, as one of the nails show a bit of ever so slight bending, Dr. Rozbruch is recommending not progressing from wheelchair/walker for another 4 weeks or so. I'm completely fine with that.

I literally could not have hoped for a better outcome. I have no side effects, no drop foot, duck ass, ballerina foot, nerve pain is gone, legs feel very strong. Absolutely nothing. My ROM (range of motion) has decreased by about 35%, but as I was incredibly flexible before starting lengthening, my ROM is still above that of the average person, according to my PT. He expects me to get it all back in 6-12 months. He expects me to regain close to my previous levels of athleticism, etc. if I work hard (this will take 2-3 years). I'm not really concerned. Fitness wise, he said there will be no difference. I'm giving up some sports and starting others. Everything worked out as it should.

Overall experience: Aside from the first 3 weeks of the procedure (and the first week was sheer hell), I was mostly pain free aside from the 4-5 CM period where nerve pain hit, because I controlled my pain pretty well with the right meds. I flew through the rest of it, especially the last 2.5 cm because I was sped up instead of being slowed down. The lengthening process itself never hurt once, which is the biggest benefit of Pecice aside from the ability to reverse. In fact, I'd choose Precice 100 times out of 100 just for that, and I hear that soon the new Precice full weight bearing nail will take care of the mobility part. It's inconvenient to not have mobility but certainly not to the point where it's a total life blocker. I got around in my wheelchair and walker just fine for the most part. I slept 10-12 hours every day, like a kid growing, and had some of the best sleep of my life. I ate really well - I'm keeping my new diet.

Overall, this is the best life decision I ever made. I feel absolutely AMAZING with my new height, and most important, the proportion of my femurs is no longer so skewed that I'm embarrassed to wear shorts because my femurs are so short. I'm actually more proportionate now than before. I would not change a thing if I had to do it again, and I'm incredibly grateful to have a world-class surgeon like Dr. Rozbruch perform the operation to get to such an awesome outcome.

Parting words for those looking at CLL and hoping for a similar outcome. Below are from my experience and believe to be good advice, but can be taken as my opinion only. Take what's useful to you, leave the rest. I just hope it's helpful.

- Sleep, nutrition, supplements, rigorous PT, exercise bike, pool, sauna. The first 4 are absolute requirements. If you can, hire a PT and/or do PT every day. A list of supplements and the diet I took to get to the bone growth I got is somewhere on this thread. I'm keeping my PT every day for at least another 2 months to ensure I get my gait and ROM back as quickly as possible.

- Don't do this on a budget. Just don't. I know the feeling of wanting to do this so bad as soon as possible. The theorem of "Good, Fast and Cheap - you can only pick two" applies here. Your desired outcome is not height, that's a preferred benefit, it's to safely walk again and get fully back to normal. Do this with an experienced Dr., in a country with a great medical system, where not only the procedure but any complications that arise can be swiftly handled.

Save your money, work a side gig, hustle. I could afford Dr. Rozbruch or Dr. Paley, but I would have done it in LA or Vegas for 70-80K all inclusive if I couldn't instead of Turkey or Greece or wherever. Be smart and give yourself the best and safest possible outcome.

- Be patient and listen to your doctor. This procedure will either teach you patience or put you back in the hospital by breaking a nail. Be OK to sacrifice a few months for a life-changing outcome. Protect your investment, because that's what this is, so you can enjoy it for the rest of your life.

- Have a support group, and do this with a friend. I was honest with people about what I was doing. It's a personal decision, but I didn't see any point in hiding what would become the obvious. I found that people were curious, supportive, mostly non-judgmental, and two are now signed up for surgery. My neighbors and friends have been rooting me on and are throwing me a party .

I could not have done this without the support and friendship of hippo06. Find someone who is doing the procedure and befriend them. We talked every day, encouraged each other, traded tips, got each other through tough times. This is now a lifelong friendship and I'm so grateful I made another close friend. Thank you so much brother for everything you did to help.

Best of luck, and farewell!!

Congratulation! I am glad to see every LLer is going well. Please ignore the provoking post and keep to update your post. I support u💪!

[GoaT]

Any update?

[uponly]

(breaking rule to post as hopefully my experience will help some folks)

I'm 6.5 weeks post distraction. Bone growth continues to be "astonishing", per Dr. Rozbruch. I was in the wheelchair for a month as a precaution since the x-ray at 8 cm showed some possible bending of my left nail, and Dr. R was worried about me overloading the nail. At 4.5 weeks, I took another x-ray, and the nail was fine. Dr. R said he had seen this before given the slight flexibility of Precise 2.2.

X-rays at 4.5 weeks were amazing. Dr. R told me to go directly to crutches for one week, then one crutch/cane alternating sides for another week or so, then walking unassisted. No jumping or running for 3 months. If bone growth continues at the same rate, he expects to clear me for all activities at the 3 month mark and schedule nail removal.

Flexibility and ROM are literally almost back to pre-surgery levels - and I was SUPER flexible before surgery. I still do PT every day and I'm so grateful to have found one of the best orthopedic PTs in the world completely out of the blind.

After a week on two crutches, I am now one one crutch/cane indoors and two outdoors just out of precaution until I get stronger. I sent a video to Dr. R and that's what Maxine (one of Dr. R's PAs) advised, which makes sense. Zero waddle, literally none. No pain other than muscle soreness. I expect to be walking unassisted with my normal gait back in 1-2 weeks per my PT. He said he can barely notice a difference as is.

I'm cleared to do leg press, leg extension and leg curls with basically zero weight and progress gradually. I do hip flexibility and hip strength exercises with my PT and alone, and pool squats and pool lunges, assisted. Today I got another exercise from my PT to strengthen my lower front quads and calves, that's done assisted, as my body doesn't yet trust my quads and my foot is hitting the ground a bit planar.

My keys to success, aside from doing surgery with Dr. R - I cannot be more grateful for choosing him for this procedure:

- Slow distraction and patience at .8 mm/day
- Maniacal and regular dedication to nutrition and supplements (see my other post)
- LOTS of sleep and rest. Lots and lots of sleep.
- PT every day, which I still do, with a specialized Physical Therapist
 --- This bears repeating. Invest in 7 days a week with a specialized PT. You will not be able to get the leverage to perform the ROM exercises needed on your own, and your PT will be able to feel muscle and body response in a way you do not.
- Pool walking and pool exercises and rehab
- Focus on hip flexibility during distraction and after. Both my PT and Dr. R said this is the absolute key to walking normally again and thus far it turns out they've been right
- Keeping a positive attitude every day and bantering with hippo06 the entire time .
- Listening to my Dr., PT and other health professionals that treated me

If you're thinking about this surgery and planning ahead, I'd recommend:

- Stop smoking, drinking, drugs at least a year in advance. I'm a lifelong nope for all of those, and it helped to have a healthy body to recover from such a tough surgery
- Come in as flexible as possible. Work on this every day, every part of your body, obviously legs and hips specifically
- Eat an incredibly healthy diet and take Vitamin D, calcium and a great multivitamin supplement daily for a year

Good luck to those going through this. I'm off crutches/cane in a week to 10 days.

[mirneeel]

(breaking rule to post as hopefully my experience will help some folks)

I'm 6.5 weeks post distraction. Bone growth continues to be "astonishing", per Dr. Rozbruch. I was in the wheelchair for a month as a precaution since the x-ray at 8 cm showed some possible bending of my left nail, and Dr. R was worried about me overloading the nail. At 4.5 weeks, I took another x-ray, and the nail was fine. Dr. R said he had seen this before given the slight flexibility of Precise 2.2.

X-rays at 4.5 weeks were amazing. Dr. R told me to go directly to crutches for one week, then one crutch/cane alternating sides for another week or so, then walking unassisted. No jumping or running for 3 months. If bone growth continues at the same rate, he expects to clear me for all activities at the 3 month mark and schedule nail removal.

Flexibility and ROM are literally almost back to pre-surgery levels - and I was SUPER flexible before surgery. I still do PT every day and I'm so grateful to have found one of the best orthopedic PTs in the world completely out of the blind.

After a week on two crutches, I am now one one crutch/cane indoors and two outdoors just out of precaution until I get stronger. I sent a video to Dr. R and that's what Maxine (one of Dr. R's PAs) advised, which makes sense. Zero waddle, literally none. No pain other than muscle soreness. I expect to be walking unassisted with my normal gait back in 1-2 weeks per my PT. He said he can barely notice a difference as is.

I'm cleared to do leg press, leg extension and leg curls with basically zero weight and progress gradually. I do hip flexibility and hip strength exercises with my PT and alone, and pool squats and pool lunges, assisted. Today I got another exercise from my PT to strengthen my lower front quads and calves, that's done assisted, as my body doesn't yet trust my quads and my foot is hitting the ground a bit planar.

My keys to success, aside from doing surgery with Dr. R - I cannot be more grateful for choosing him for this procedure:

- Slow distraction and patience at .8 mm/day
- Maniacal and regular dedication to nutrition and supplements (see my other post)
- LOTS of sleep and rest. Lots and lots of sleep.
- PT every day, which I still do, with a specialized Physical Therapist
 --- This bears repeating. Invest in 7 days a week with a specialized PT. You will not be able to get the leverage to perform the ROM exercises needed on your own, and your PT will be able to feel muscle and body response in a way you do not.
- Pool walking and pool exercises and rehab
- Focus on hip flexibility during distraction and after. Both my PT and Dr. R said this is the absolute key to walking normally again and thus far it turns out they've been right
- Keeping a positive attitude every day and bantering with hippo06 the entire time .
- Listening to my Dr., PT and other health professionals that treated me

If you're thinking about this surgery and planning ahead, I'd recommend:

- Stop smoking, drinking, drugs at least a year in advance. I'm a lifelong nope for all of those, and it helped to have a healthy body to recover from such a tough surgery
- Come in as flexible as possible. Work on this every day, every part of your body, obviously legs and hips specifically
- Eat an incredibly healthy diet and take Vitamin D, calcium and a great multivitamin supplement daily for a year

Good luck to those going through this. I'm off crutches/cane in a week to 10 days.

oh nice, this whiny soy chugger is back with his updates. glad to see you are out of your diapers there, soy chugger

[uponly]

I walked unassisted today after 7 days of crutches and 3 days of crutch/cane. Just across my living room and back. Gait is totally normal. Slight wobble, which my PT says is from lack of strength in quads, hips and glutes. No soreness. Just... walked.

I couldn't be happier with the outcome. I will stay on cane/crutch inside and two crutches outside this week as Dr. Rozbruch recommended but feel much more confident dropping both and gradually increasing unassisted walking after another week, and continuing to strength train.