Limb Lengthening Forum

Please login or register.

Login with username, password and session length
Advanced search  
Pages: [1] 2   Go Down

Author Topic: LL experience overview: bilateral femurs with Dr. Assayag 9/22  (Read 5184 times)

0 Members and 4 Guests are viewing this topic.

user1396

  • Newbie
  • Offline Offline
  • Posts: 30
LL experience overview: bilateral femurs with Dr. Assayag 9/22
« on: December 23, 2022, 08:35:09 PM »

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.   
 
« Last Edit: December 23, 2022, 09:22:50 PM by user1396 »
Logged

lessthanavg8300

  • Sr. Member
  • ***
  • Offline Offline
  • Posts: 578
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #1 on: December 23, 2022, 11:12:37 PM »

I 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.
Logged
Gained 3.2CM on femurs for a final height of 5'8.5-5'8.75.

user1396

  • Newbie
  • Offline Offline
  • Posts: 30
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #2 on: December 23, 2022, 11:36:47 PM »

I 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.
Logged

ThirdSpace

  • Visitor
  • Offline Offline
  • Posts: 22
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #3 on: December 24, 2022, 02:24:43 AM »

Congratulations! 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?
Logged

user1396

  • Newbie
  • Offline Offline
  • Posts: 30
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #4 on: December 24, 2022, 04:03:52 PM »

Congratulations! 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.
Logged

QuarkSoup

  • Jr. Member
  • *
  • Offline Offline
  • Gender: Male
  • Posts: 107
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #5 on: December 24, 2022, 10:33:36 PM »

Thank you for sharing your experience. I thought it would get harder and harder as you grow but after looking at your experience it seems to be not the case. I am at 2.9cm and my distraction rate is 0.1cm a day. My whole journey is going very smoothly with almost no pain. I am wondering whether it can continue like this.
Logged
Pre-surgery Height: 173.5cm (5'9)
New Height: 182cm (6'0), gained 8.5cm on Femurs
Surgery Dates: 22 Nov 2022 LON on Femurs,  device removal on 9th Feb 2023
Surgeon: Yunus Oc, wannabetaller, Istanbul Turkey
http://www.limblengtheningforum.com/index.php?topic=78384.0

user1396

  • Newbie
  • Offline Offline
  • Posts: 30
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #6 on: December 25, 2022, 03:21:53 PM »

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.
« Last Edit: December 25, 2022, 03:52:30 PM by user1396 »
Logged

MosheRothPT

  • Visitor
  • Offline Offline
  • Posts: 9
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #7 on: December 27, 2022, 03:37:29 AM »

Thank you for sharing your experience. I thought it would get harder and harder as you grow but after looking at your experience it seems to be not the case. I am at 2.9cm and my distraction rate is 0.1cm a day. My whole journey is going very smoothly with almost no pain. I am wondering whether it can continue like this.
Thank you for sharing your experience. I thought it would get harder and harder as you grow but after looking at your experience it seems to be not the case. I am at 2.9cm and my distraction rate is 0.1cm a day. My whole journey is going very smoothly with almost no pain. I am wondering whether it can continue like this.

Happy to help you out with the PT portion as you move on with your journey.
Logged

eztic123

  • Visitor
  • Offline Offline
  • Posts: 13
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #8 on: December 31, 2022, 04:08:18 AM »

How 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?
Logged

user1396

  • Newbie
  • Offline Offline
  • Posts: 30
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #9 on: December 31, 2022, 05:20:47 PM »

How 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.

Logged

eztic123

  • Visitor
  • Offline Offline
  • Posts: 13
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #10 on: January 29, 2023, 05:47:28 AM »

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

user1396

  • Newbie
  • Offline Offline
  • Posts: 30
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #11 on: January 29, 2023, 04:23:49 PM »

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.
Logged

user1396

  • Newbie
  • Offline Offline
  • Posts: 30
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #12 on: March 19, 2023, 02:59:47 PM »

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!
Logged

ballsackoffury123

  • Jr. Member
  • *
  • Offline Offline
  • Posts: 148
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #13 on: April 03, 2023, 08:00:35 AM »

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
Logged

lostinsole

  • Visitor
  • Offline Offline
  • Posts: 21
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #14 on: April 04, 2023, 02:31:56 AM »

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.
Logged
Femurs: 8cm with Precise 2.2, March 2022
Tibias: 5cm with Precise 2.2, November 2022
Starting Height: 5' 3.5" -- Current Height: At least 5' 8.5" -- Goal Height: 5' 9"

eztic123

  • Visitor
  • Offline Offline
  • Posts: 13
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #15 on: April 05, 2023, 09:52:09 PM »

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

Yau

  • Jr. Member
  • *
  • Offline Offline
  • Posts: 115
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #16 on: April 07, 2023, 02:21:46 AM »

Any update?
Looking forward to know ur well recovery!
Logged

user1396

  • Newbie
  • Offline Offline
  • Posts: 30
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #17 on: April 08, 2023, 03:55:43 PM »

How 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.
Logged

user1396

  • Newbie
  • Offline Offline
  • Posts: 30
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #18 on: April 08, 2023, 03:58:05 PM »

Any 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.
Logged

user1396

  • Newbie
  • Offline Offline
  • Posts: 30
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #19 on: April 08, 2023, 04:07:04 PM »

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.

Sounds great man, looking forward!
Logged

user1396

  • Newbie
  • Offline Offline
  • Posts: 30
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #20 on: April 08, 2023, 04:08:27 PM »

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

Thank you! Wishing you the best on your journey.
Logged

Yau

  • Jr. Member
  • *
  • Offline Offline
  • Posts: 115
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #21 on: April 08, 2023, 04:46:52 PM »

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.

Did u tell your cardiovascular condition to Dr Assayag? What did he say? How bad is your condition?
Hope u will be better!
Logged

user1396

  • Newbie
  • Offline Offline
  • Posts: 30
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #22 on: April 08, 2023, 04:56:29 PM »

Did u tell your cardiovascular condition to Dr Assayag? What did he say? How bad is your condition?
Hope u will be better!

Thanks - I just meant I’m in bad cardio shape since I’ve been sedentary for 6 months! Nothing to worry about.
Logged

Yau

  • Jr. Member
  • *
  • Offline Offline
  • Posts: 115
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #23 on: April 12, 2023, 02:42:48 PM »

Thanks - I just meant I’m in bad cardio shape since I’ve been sedentary for 6 months! Nothing to worry about.

Keep to update your diary! Let us know your progress!
I am also considering Dr Assayag, he is a honest and caring dr.
Logged

hippo60

  • Full Member
  • **
  • Offline Offline
  • Posts: 259
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #24 on: April 12, 2023, 10:28:54 PM »

Amazing diary! Glad you're doing better with your recovery.

When you did the accordion method, you were doing just 1mm back and forth or more? And that was weeks into your consolidation? I'm in a somewhat similar position so would be interesting to hear how it worked for you (I remember Assayag doing it with other patients as well).

Besides walking, are you working on strength as well? Or not yet?
Logged

user1396

  • Newbie
  • Offline Offline
  • Posts: 30
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #25 on: April 13, 2023, 01:01:26 AM »

Amazing diary! Glad you're doing better with your recovery.

When you did the accordion method, you were doing just 1mm back and forth or more? And that was weeks into your consolidation? I'm in a somewhat similar position so would be interesting to hear how it worked for you (I remember Assayag doing it with other patients as well).

Besides walking, are you working on strength as well? Or not yet?

Thank you, hippo! In my case, we knew bone growth was a little lagging on the left side for about a month approaching consolidation. So when I finished lengthening to 8cm, I immediately started doing accordion of 1mm back and forth each day. For example, Monday contract by 1mm, Tuesday lengthen 1mm…and so forth for about a month until I saw Dr. A in person and he gave me the okay to stop.

It’s hard to tell how much of a difference it made since there’s no real baseline to compare with, but guess my bone growth was satisfactory by one month into consolidation that the doctor was okay stopping accordion. It was certainly a huge relief to turn in the ERC!
Logged

hippo60

  • Full Member
  • **
  • Offline Offline
  • Posts: 259
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #26 on: April 13, 2023, 01:51:15 AM »

Thank you, hippo! In my case, we knew bone growth was a little lagging on the left side for about a month approaching consolidation. So when I finished lengthening to 8cm, I immediately started doing accordion of 1mm back and forth each day. For example, Monday contract by 1mm, Tuesday lengthen 1mm…and so forth for about a month until I saw Dr. A in person and he gave me the okay to stop.

It’s hard to tell how much of a difference it made since there’s no real baseline to compare with, but guess my bone growth was satisfactory by one month into consolidation that the doctor was okay stopping accordion. It was certainly a huge relief to turn in the ERC!

That's super interesting! Maybe the baseline is the comparison to your other leg?
After that month you were ok to start walking with a walker? Did you have any limitations?

And just out of curiosity, did you have to re-program the machine every day? Or did you just turned it upside down?

Just to share my perceptive - I'm a Dr. Rozbruch's patient, and in a somewhat similar scenario. I'm finishing in a few days and will start the accordion method as well. In my case, he wants me to go back to 7cm and then back to 8cm (over 30 days). He's fairly confident I'll catch up with my other leg and able to weight-bear. Was slightly nervous about it but definitely prefer that over just waiting and hoping for the best.
Logged

user1396

  • Newbie
  • Offline Offline
  • Posts: 30
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #27 on: April 14, 2023, 10:40:53 PM »

That's super interesting! Maybe the baseline is the comparison to your other leg?
After that month you were ok to start walking with a walker? Did you have any limitations?

And just out of curiosity, did you have to re-program the machine every day? Or did you just turned it upside down?

Just to share my perceptive - I'm a Dr. Rozbruch's patient, and in a somewhat similar scenario. I'm finishing in a few days and will start the accordion method as well. In my case, he wants me to go back to 7cm and then back to 8cm (over 30 days). He's fairly confident I'll catch up with my other leg and able to weight-bear. Was slightly nervous about it but definitely prefer that over just waiting and hoping for the best.

I'm not sure my left ever caught up to the right, still a bit behind, but apparently it was good enough to move to the next phase. I had been using a walker already, so I was able to switch over to crutches following that month of accordion and then switched to a cane one month later after my next x-rays.

I didn't have to reprogram daily, just did it once at the beginning with the help of the Nuvasive guy and then just flipped upside down on contraction days and right-side up on lengthening days. 

Yeah, I've heard there are multiple approaches to accordion - 1mm, 5mm, and 1cm - depending on the doctor. I asked if I could try the 1mm variety just because it would have been psychologically disturbing to me to retract by a full cm. That said, there's a good chance it could be more effective the way Dr. R is recommending.

Congrats on making it this far - wish you the best! Keep me posted. 
Logged

hippo60

  • Full Member
  • **
  • Offline Offline
  • Posts: 259
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #28 on: April 15, 2023, 12:37:33 AM »

I'm not sure my left ever caught up to the right, still a bit behind, but apparently it was good enough to move to the next phase. I had been using a walker already, so I was able to switch over to crutches following that month of accordion and then switched to a cane one month later after my next x-rays.

Yeah, I've heard there are multiple approaches to accordion - 1mm, 5mm, and 1cm - depending on the doctor. I asked if I could try the 1mm variety just because it would have been psychologically disturbing to me to retract by a full cm. That said, there's a good chance it could be more effective the way Dr. R is recommending.

Congrats on making it this far - wish you the best! Keep me posted.

You were already on a walker as soon as you finished lengthening? Or did you finish, move to walker, and then did that to speed things up?

I wasn't "offered" any other options ;D, he basically said it's either just wait or do this. He mentioned the bone likes to get crushed and he had very positive results with that method. I can definitely see the psychological aspect but honestly I don't care too much, I'll do what needs to be done to move forward ;)

And thanks man, likewise!
Logged

user1396

  • Newbie
  • Offline Offline
  • Posts: 30
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #29 on: April 15, 2023, 03:35:15 PM »

You were already on a walker as soon as you finished lengthening? Or did you finish, move to walker, and then did that to speed things up?

I wasn't "offered" any other options ;D, he basically said it's either just wait or do this. He mentioned the bone likes to get crushed and he had very positive results with that method. I can definitely see the psychological aspect but honestly I don't care too much, I'll do what needs to be done to move forward ;)

And thanks man, likewise!

I actually started with the walker way earlier during the distraction period. I weighed about 135 pounds and had the 75 pound rods so we figured there was little risk, and in general I think Dr. A is comfortable with the risk / reward profile of getting people to partially weight bear a bit earlier to stimulate bone growth. I suppose  that helped me  but no way of really knowing.

“Bone just likes to be crushed” - that’s gotta be one of my favorite new LL sayings, Lol.
Logged

Yau

  • Jr. Member
  • *
  • Offline Offline
  • Posts: 115
Re: LL experience overview: bilateral femurs with Dr. Assayag 9/22
« Reply #30 on: April 16, 2023, 01:03:20 AM »

Quote
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.

How about your gait now? Did u improve the severe APT(duck-ass)?
Logged
Pages: [1] 2   Go Up