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 procedureI 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 TherapyAs 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.
WorkI 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 HealthUltimately, 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 statusTimeline 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.
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Topic: LL experience overview: bilateral femurs with Dr. Assayag 9/22 (Read 5213 times)