Hey everyone! I have not posted much, but I have spent countless hours on this forum reading through numerous threads and absorbing lots of helpful information. Thanks to all who have contributed to the community in a positive way.
I would like to give a little bit back to the community by sharing my LL experience as I approach the end of the lengthening phase. I prefer the posts that summarize in larger chunks rather than frequent, small bites so I will adhere to that style.
While I am not out of the woods yet, this was absolutely the right decision for me and I am beyond happy with the results so far.
I would be happy to answer any questions here or over DM.
My stats
Age: 30-35
Location: Northeast USA
Procedure: Bilateral Femur with Precise 2.2
Starting height: ~164cm
Current height: ~171cm
Goal height: ~172cm
Rationale for doing this procedure
I am generally a frugal / cautious person, so taking a risk like this (both financially and physically) was not a small undertaking for me. While my small stature always bothered me, I reached a point in my life where I was so ashamed of my stature that it precluded me from going outside, meeting people, and generally living a full life. After learning about this surgery last year, I sunk into a major depression over whether to move forward or not. Eventually, I realized that this would always be on my mind if I did not take action, so I decided to move forward.
Surgeon selection
From the beginning, I only considered doing this procedure in the US, and frankly only on the East Coast due to the excessive marketing tactics and questionable credentials of the doctors on the West Coast. That narrowed it to three institutions - HSS in New York, Sinai in Baltimore, and Paley in Florida. I decided to consult with doctors at each institution - Dr. Paley, Dr. Rozbruch, and Dr. Assayag.
Dr. Paley: First of all, I have all the respect in the world for Dr. Paley's credentials, experience, and his innovations in the field. I enjoyed speaking with Dr. Robbins and was impressed with the full team they brought to bear on the call (including PT, nurse, admins etc) although it was slightly intimidating. Dr. Paley himself was a bit late to the consultation and struck me as being in a rush - I don't fault him for this but given his busy workload and # of patients this was another datapoint that had me questioning how much individual attention I would receive at the Paley institute. That, combined with the need for lodging in Florida above and beyond the base price, gave me second thoughts.
Dr. Rozbruch: On a personal level, I enjoyed meeting with Dr. Rozbruch - he's a warm guy with an incredible reputation and a certain humility about him despite everything he's accomplished. He was originally my first choice (before meeting Dr. Assayag) and I was prepared to move forward with him until I received the estimate of costs from his office which was shocking and far beyond any of my expectations. Furthermore, I did not feel as though his staff treated me with respect, and there was a clear lack of communication between his office / hospital that also gave me pause.
Dr. Assayag: At the time of my research there was relatively little information about Dr. A on the forum compared to other doctors, but I stumbled across two excellent journals on this site complete with videos - Raz and Height Journey - that greatly increased my level of comfort with entrusting Dr. Assayag and the Sinai / Rubin institute team with my care. I also liked that Dr. A frequently engages with the LL community here as it made him seem much more accessible relative to the the aforementioned practitioners. It was very easy to schedule calls / video chats with Dr. A and was impressed by his friendliness, thoroughness, knowledge, and humility. Moreover, he works side by side with some the greatest names in the LL / reconstruction business - Dr. Herzenberg, Dr. Conway, and others - giving him access to the opinions of other talented physicians on staff. As if that were not enough, his price was extremely competitive (including affordable lodging nearby) compared to the other doctors.
Although Baltimore was initially my least preferred location relative to NY and Florida, with all the above factors considered, choosing Dr. A was an absolute no brainer. This choice turned out to be spot on as the quality of medical care and Physical Therapy I have received has been fantastic, with the exception of my hospital experience which I will detail below and is not Dr. A's fault.
Physical Therapy
As most of you know, frequent and quality PT is absolutely crucial for successful femur lengthening. Dr. A's patients have a few options for physical therapy. One option is to do PT at Sinai Hospital using insurance. The other is to work with Moshe Roth (https://mrothpt.com), a 20+ year veteran of LL physical therapy. While Moshe does not take insurance, his skill is top notch and he visits you right at your hotel room, which is a lifesaver particularly in the early days when you are pretty bed-bound or if you are doing this in the winter.
While many patients do a mix of Moshe and Sinai PT, I decided to work exclusively with Moshe for the convenience and because of his reputation. He is very skilled and also philosophically does not believe in causing patients pain when it's not therapeutically necessary. While I am not used to spending this kind of money on myself, I consider this a once in a lifetime chance and engaging Moshe was the right decision for me. I honestly don't know if I would have made it this far in the journey without him. In addition to his therapeutic skill, he is genuinely a great guy to talk to, which is important given how lonely and isolating this adventure can be at times.
Work
I gave my employer about 6 months advance warning about this procedure (without going into specifics) and was able to take advantage of a generous leave policy to take 3.5 months off. This got me through most of the lengthening period. I probably could have started working cognitively and energy-wise about 6 weeks post-op, but it was much better to be able to focus on PT and recovery and not worry about job stress. Starting in a few weeks, I plan to resume working remotely from home while finishing lengthening and consolidating.
Mental Health
Ultimately, I believe that keeping a positive perspective and an even keel is the most crucial factor that separates those who can reach their goal and those who cannot. I would not go around telling everyone about this, but I do highly recommend you tell close family and friends that you trust about the procedure. You might be surprised how understanding folks are, everyone in this world is suffering from one thing or another. I personally had no shame about doing this procedure and told my family and a number of friends who provided a lot of emotional support for me along the way.
FWIW my advice: If you are staying near the hospital around other patients, try to befriend fellow patients and create a sense of community around you - you will be inspired and encouraged by others (CLL and otherwise), both by the patients themselves and their brave parents. If you want to stick to yourself that is also fine, but I highly recommend that you conduct yourself with class and not be an a-hole. While we live in an individualistic western society and are pursuing this procedure for somewhat selfish reasons, the world does not revolve around us and our needs - it's important to think about the hospital staff, the nurses, the doctors, the cleaning people, management of the hotel / accommodations, everyone that you interact with. I don't want to overly moralize, but I have seen some disrespectful / entitled CLL patients and it is painful to watch.
Timeline and current status
Timeline below is approximate, to the extent I can remember.
Day 0 (surgery): I woke up very early on the morning of the surgery and had my mom, who I flew into town to accompany me, drive me to the hospital. Surprisingly, I had very little nervousness and was overtaken by a sense of calm and surrender. I think this is because I made peace with all the risks. Although the odds are remote, death from FE / PE is a real possibility, irrespective of the skill of the surgeon. However, given the crushing pain of heightism and height neurosis, I came to terms with this possibility, and as such was willing to accept whatever consequences came my way.
I won't go into all the details of the preparation since this is more or less standard. However, seeing Dr. A and joking around with him prior to being sedated, gave me that crucial, final boost of confidence that I was in good hands.
Day 1-3 (hospital stay): The surgery itself took place at Northwest Hospital (NWH), which is part of the umbrella of hospitals owned by LifeBridge Health (I believe Sinai is their flagship hospital). This lowers the price relative to doing the procedure at Sinai, so this was the default option for Dr. A's CLL procedures at the time of my surgery.
NWH was the only part of the journey I have not been thrilled with so far. I don't want to get into too much detail here, because frankly it is not a fond memory. The day of my procedure, the hospital was too busy to handle the caseload of patients, and I ended up spending 10-12 hours in the recovery room with very minimal privacy. I don't know if this was a management issue or simply an excessive and unexpected caseload for that day. When I was finally escorted to my room upstairs (very, very small), I was left there in the dark by the transport guys for a significant amount of time before a nurse greeted me and hooked me back up to the IV. This was a moderately terrifying experience. The quality of the nursing staff was very hit or miss - some of them were extremely attentive while others I felt neglected and ignored me. While I was disappointed, this is likely the standard of care at most hospitals in America, so I was not entirely surprised. I imagine the hospital experience would be much better in Asia and perhaps Europe.
Day 4: It was a massive relief to leave the hospital and return to my accommodations. For the first week, while the surgical pain was largely under control with the prescribed medications (Oxy, Tylenol, Celebrex) and I was in good spirits, but as expected my range of motion, cognition, and energy to complete basic tasks was definitely compromised. As such, it was extremely helpful to have my mom there for this period. However, I regained independence much sooner than I expected (about 1 week after returning home) and my mom was able to go home about 2 weeks earlier than we had planned. Additionally, on day 4 the rep from Nuvasive brought my ERC (Electronic remote control) right to my room and gave me a tutorial on how to lengthen.
Day 5: I began lengthening 5 days after surgery at a rate of 1mm per day - this was one of the most exciting days of my life as it felt like the journey to grow taller was finally under way. I was a little apprehensive about using the machine, but as promised it was completely painless and I was beyond ecstatic to finish the day 1mm taller.
Days ~5-35 (~0cm - 3cm): The next month or so was relatively easy. Surgical pain disappeared mostly after the first few weeks and I stayed relatively loose by seeing Moshe three times per week and completing the recommended stretches on my own time. The difficult part during this period was just eating enough (Dr. A recommends 2500+ calories per day) with no appetite - although I am usually fairly healthy, I resorted to eating tasty junk foods, like Pizza, for a short period of time to get me over the hump.
Days ~35-50 (~3cm - 4cm): At around 28mm, I started to get fairly tight and we made the decision to slow down lengthening. This made everything significantly easier. I also got off all of the pain meds, and began to experience some insomnia at night without the Oxy to knock me out. Eventually, I discovered that a low dose of THC / CBN / CBD (you will need to find a source for this as you cannot buy in MD without a medical license) did the trick for me as far as sleep, and also stimulated my appetite (obviously).
Days ~50-70 (~4cm - 6cm): This period was smooth sailing - I was getting decent sleep which made it easier to comply with my PT regime. Around 6 I started to get very tight again and we dropped the distraction rate to 0.5mm per day.
Days ~70-present (~6cm-7cm): While I was prepared for an exponential increase in difficulty, that has not yet occurred. Things have been relatively smooth at the 0.5cm rate, although it obviously takes much longer to hit the next 1cm increment, which is frustrating. I have a little bit of duckbutt and difficulty with knee extension due to my own laziness, but I am confident from talking to others that this will go away quickly in consolidation.
Next steps: I plan to leave Baltimore in the next few weeks and complete distraction at home. Dr. A prefers that you stay around for the duration of the lengthening period, but was willing to accommodate my request to go home a few weeks early. I felt the need to get home before starting work because my environment at home is much more conducive to focus and productivity, and frankly I could use a change of scenery after 3+ months away. I recommend you stay in Baltimore for the whole lengthening period, but if you do plan to go home at some point, it is important to have a plan in place to continue PT and get regular X-rays to be shared with Dr. A's team.
Thanks for reading this far and please ask me any questions! I'll plan to update again after I finish lengthening and perhaps into consolidation.
LL experience overview: bilateral femurs with Dr. Assayag 9/22
Quote from: lessthanavg8300 on December 23, 2022, 11:12:37 PMI have a mild fear of taking opioids just because so many get addicted and I hate the way they make me feel. Do you think you could do this surgery without them? I have access to basically unlimited marijuana products.
I don't think addiction is likely if you use them carefully under the supervision of your doctor. Personally, I don't think THC would have been sufficient to handle breakthrough pain in the early days and I was very grateful to have access to opioids. That said, if you react poorly to opioids you may want to discuss alternatives with your medical provider, as I'm not an expert on pain management.
Quote from: ThirdSpace on December 24, 2022, 02:24:43 AMCongratulations! Seems you had a great experience. Dr. A seems to be competent and above-board which are qualities rare enough for a surgeon to have on their own let alone in conjunction.
What advice would you give yourself at the beginning of this journey now that you’re at the relative end of it?
Yes, he’s competent and very honest. He does not sugarcoat the timeline for recovery, while I have heard other doctors downplay the difficulty both in person and in interviews.
Good question - I would say at some point prior to surgery I should have stopped checking this forum (diminishing marginal returns) and just fully trusted the medical team’s expertise. The forum can be very anxiety provoking sometimes, and lead me to believe this experience would be more difficult than it actually was.
Good luck to you on your journey, Quark!
Yeah, it’s not necessarily linear at all. Part of the reason for this was my decision (with recommendation of PT and Doctor) to slow down my distraction rate when I got to a certain level of discomfort. It’s a huge relief and almost like a reset that enabled me to make progress against the tightness and move forward with more ease.
If you continue to stay loose at 1mm per day, go for it! However, likely you will tighten up at some point and in that case I highly recommend you slow down and focus more on day to day comfort than speed.
Quote from: eztic123 on December 31, 2022, 04:08:18 AMHow much was the cost for Precice femurs? Does it just include the cost of the surgery? Also, there's no weight bearing during the entire duration of lengthening I assume?
Dr. Assayag gives a price breakdown on his website which is pretty much exactly what I paid - I think it came out to around 70k and change including PT 3x per week. That does not include housing or food.
Weight bearing depends on your weight and size of the nail used, which is determined by the width of your bone canal. In general though, you should be able to walk using the walker at least a limited amount during lengthening, so you are not necessarily wheel chair bound. Of course one needs to be careful and take precautions, make sure you are offloading some weight etc.
I am about 4 months post-op, still need a walker to get around. I am waiting for the doctors clearance in order to use crutches. I would estimate another few months before I’m walking unassisted. That is a realistic time table for a precise 2.2 patient, so no surprise.
Hey everyone,
Since it's been around three months since I first posted, and exactly six months since my procedure, I thought I would provide an update on my status.
Right now I am two months into consolidation, after returning home in the beginning in January and finishing lengthening in the middle of that month. I am happy to report that things have improved dramatically since finishing lengthening. While it's important to re-iterate that I am by no means out of the woods, my mobility has increased significantly and my level of physical discomfort has decreased accordingly. My mental state continues to be extremely positive as I reap the life-changing benefits of my new stature.
Returning home: January 2023
I left Baltimore in early January, returned back to my apartment in a large US city and went back to work full-time the following week. In terms of the move, I was fortunate to have the help of family and access to a vehicle, because this would have been impossible on my own without spending a fortune.
At around this time, at about 7cm of distraction, lengthening became significantly more difficult. I fundamentally fault myself for not stretching more, but as my job picked up steam it was hard to devote the same kind of time and effort to stretching. However, to some extent I think the difficulty was somewhat attributable to the sheer amount of distraction vs. personal failing. Either way, I took it very slowly, skipping a few days here and there to give myself some relief.
Unfortunately, I developed fairly severe APT (duck-ass) during this time period, to the extent that it was highly noticeable to friends and family - this initially lowered my willingness to go out and meet up with friends. Additionally, at this time, my muscles were extremely sore and tight and I required the use of an electric scooter to leave my apartment. I was fairly hesitant to leave my place or take public transit due to the extent of my disability. Moreover, I experienced significant stiffness in my legs and needed to take Tylenol / Celebrex to get through the night.
That said, it was a tremendous relief to be back home and get back into the routine of working. I found that my mental acuity was way less compromised than I expected and I could handle all my work tasks with ease. If I could do it over I might have gone back to work earlier, but ultimately I felt that the environment at the hospital was not very conducive to working (first and foremost bad WiFi) and I don't regret taking the time off.
Slowly improving: Week 0 - Week 6 of consolidation
Improvement was very slow and incremental from January to the beginning of March. Again, I deserve most of the blame for this. While I was able to identify a PT provider in my area and started going 2x per week, I was not as motivated to keep up with a consistent exercise regimen on my own. If I had applied myself more my progress may have been faster, but I was preoccupied with other priorities as I slowly ramped back into normal life. I did however start going to the gym in my building and using the bicycle every day, which helped me both physically and emotionally.
My recovery was also hampered by less than stellar bone growth on my left leg. While not "catastrophic", my bone generation could have been better. This was probably driven by my reluctance to continue consuming the recommended 2500 - 3000 calories per day, as I am used to eating <2000 and the thought of that much food frankly started to sicken me. To try to stimulate bone growth, I began doing the accordion method on the left leg, contracting and then distracting by 1mm each day. While not painful, I perceived that this had a negative impact on my soft tissue recovery.
That said, my mobility started to slowly improve, and I started taking more trips out of my apartment - first on the electric scooter, then increasingly on the walker. I limited my range of activity to about 5 city blocks, because my cardiovascular and muscular stamina was not simply not sufficient to exceed this at the time. I could not imagine taking public transit with a walker, so I was limited to short distances or Lyft / Uber when necessary to go farther.
In the middle of February, I decided to visit Dr. Assayag and team in person in Baltimore. While most of the correspondence after lengthening can be handled remotely (via X-rays and email), there is no substitute to seeing the team in person. Although this can be somewhat expensive (transportation and lodging), I highly recommend visiting in person every 2-3 months following lengthening because of the thoroughness and level of attention that's only possible in person. At Dr Assayag's office, I took measurements to confirm no discrepancy between leg lengths, and at last received clearance to transition from the walker to forearm crutches.
Accelerating pace of recovery: Week 6 - present
Transitioning to the forearm crutches was a massive psychological boost that accelerated my recovery significantly. While I'm not proud of this, I felt somewhat embarrassed to be seen in public on a walker given all the stigma associated with disability. However, with forearm crutches I simply felt like a normal guy (an athlete even) recovering from injury, with significantly less shame. As such I significantly increased my time spent outside and my daily step count. About two weeks after getting on the crutches, I started taking public transportation more regularly, which increased my sphere of activity dramatically.
Around this time I also identified a provider of in-home physical therapy to work with me 2x per week until the end of March, and then likely 1x per week thereafter. She is phenomenal, extremely talented and caring, and insurance also picks up most of the expense so my out-of-pocket is only $45 per session at this time. Recall that I paid $150 / session in Baltimore - while it was 100% worth it during lengthening to work with Moshe given his experience with LL, it is a financial relief to no longer be spending as much on PT each month.
The last month has gone by in a heartbeat. I increasingly feel like I am on the mend and the pace of improvement increases day by day. While my bone growth is still less than desirable, my muscle flexibility and stamina is coming back and I am able to take some steps unassisted within my apartment. After taking my monthly X-rays, I was cleared by Dr. A to transition to using a cane. Once again, this represented a massive psychological improvement from using crutches. While the is obviously visible, and I do get stares from time to time, it is much sleeker and more understated than crutches and can be easily slipped under the table at a bar / restaurant.
In terms of my psychological health, I feel happier and more content than I have at any time since adolescence. My level of confidence and interpersonal assertiveness has soared, and I increasingly (politely) stand up for myself in professional and personal situations where I would have meekly backed down in the past. I am no longer ashamed to live my life. That is unequivocally worth every penny spent and every moment of discomfort endured over the last 6 months!
That's my update for now. My plan is to update once again after I am walking independently with greater ease - I expect this to be around May or June. I welcome any questions or replies - feel free to DM if more personal in nature. Thanks for reading this far!
Quote from: eztic123 on April 05, 2023, 09:52:09 PMHow long does the doctor say you can walk unassisted without any aid?
I technically got cleared for that a few weeks ago, but I still kind of need the cane for balance and because I just feel awkward limping on the street with no assistive device. But I am totally able to walk around my apartment and hallway unassisted, thought the gait has a long ways to go.
Quote from: Yau on April 07, 2023, 02:21:46 AMAny update?
Looking forward to know ur well recovery!
Thanks! Not much of a change since last time, slowly increasing my step count. My cardiovascular condition is pretty bad right now (obviously), that’s a bit of a bottleneck along with muscle tightness. I’m going to see the doctor in a few weeks and will post an update then.
Quote from: lostinsole on April 04, 2023, 02:31:56 AMThanks for sharing your story. Looking forward to connecting next time I am on the east coast, and both of us taking our new wheels for a spin!
I will invite my friend you met and maybe we can grab some Japanese food.
Sounds great man, looking forward!
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