LL experience overview: bilateral femurs with Dr. Assayag 9/22

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Hi, how are you doing right now? How long has it been post op and are you able to walk comfortably without aid?

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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.

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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!

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great read,  great journal.  I’m 1.4cm in my precise 2.2 journey with dr d in Las Vegas and know I’ll have a long journey ahead.  Great to be able to read about what to expect going forward

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Thanks 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.

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How long does the doctor say you can walk unassisted without any aid?

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Any update?
Looking forward to know ur well recovery!

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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.

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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.

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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!