Precice 2.2 Diary - Baltimore w/ Dr Assayag (April 2021)

Hi there! Starting this diary to share my experience with limb lengthening in the hope that it'll be useful to others. I'd also love to hear from those of you who've undergone limb lengthening or are currently going through it. Feel free to share tips or comment if any part of my experience resonates with you!

I got the surgery a little over three weeks ago, on April 8th 2021. I got the Precice 2.2 implanted in both femurs. I think I got the smallest adult size of the nails, so I'm allowed to weight bear max 50lbs on each leg.

Gender: female
Pre-surgery height: 4'10"
Pre-surgery weight: 112 lbs

Lengthening goal: I'm shooting for 2-2.5 inches, but if I can get any more than that, that'd be amazing, provided I still look somewhat properly proportioned (I was told my calf to femur length ratio is below average, so I'm mindful of the fact that lengthening my femurs will make this ratio even worse..trying to lengthen while keeping this in mind so I don't make my proportions significantly worse).

Highlights of my journey so far (I'm 25 days post surgery as of today's date, and have distracted 18.2 mm so far):

Impressions of Dr Assayag and the team - like many other former patients who've posted on here, I think Dr Assayag and his team are amazing. Incredibly easy to contact, they listen to you, work with you on every aspect of the process - financial, medical, logistics (including housing and PT), moral support and so much more. I'm so so grateful to them and so far am feeling so happy that I'm going through this process with Dr Assayag and his team.

Impression of surgery - surgery was really smooth and I felt that my pain was well-controlled **when I was laying still**. One thing I regret - I was trying really hard to avoid taking Oxycodone in the second and third days of my stay because of the fear of addiction. But without it, it was difficult to move my legs, and that made my PT sessions in the hospital pretty rough, until I realized I needed to just take the Oxy so I could get through the PT. I think those PT sessions in the hospital are really critical for getting the confidence to get out of bed and do basic things early on in this process, and also feel confident enough to do the exercises they tell you to do, since you do those exercises during PT over the next couple weeks as well. So yeah lol - I had the misconception that taking a few pills of Oxy = immediate addiction which is just not how these things work. Def talk this through with your doctor if you have the same fear!

Discharge and adjustment to life in a wheelchair - this went really well, 100% due to the fact that my dad is here with me and I had a private duty nurse come home and help out when he was busy with work. I think having around the clock help post-surgery was super critical for me. Also, its super important to find wheelchair accessible accommodation (by this I just mean that the doorframes are wide enough to accommodate wheelchairs, the layout is spacious, and the bathroom is spacious enough for a wheelchair..since I have help, I didn't need for the appliances to also be wheelchair accessible, but this is a great option if you're able to get this!). Since my accommodation was accessible by wheelchair, adjusting to the wheelchair life was quite easy for me. The only mildly challenging thing for me was learning how to shower and use the toilet, but I learned some techniques for that and was able to shower really easily alone by end of week 1 and use the toilet really easily by end of week 2. I won't go into detail about that for now, but I'll def try to write up my techniques later in case they're helpful for anyone.

Pain management post-surgery - this is something I'm still sort of struggling with, although it has gotten a lot better. I had the a pretty rough time doing lengthening in the first few weeks. I was doing .25 mm 4x a day. The act of distracting on my left leg was super painful (weirdly, i felt NO pain on my right leg) The pain would start during the lengthening session and last for 2 to sometimes 3 hours after lengthening, ranging from a pain level of 5 to even 8 sometimes. The pain was a really annoying dull but intense stretching pain, starting and staying in my thigh, but also it'd radiate throughout the rest of my leg too.  Going through this 4x a day was really exhausting - a few times I skipped the fourth session, and one day I just didn't lengthen at all. I know that was not a good idea but I just wanted a break from all the pain. I let Dr A know about this and he was super responsive and tried to understand the root cause. He first suspected a blood clot, so I got an ultrasound for that which came back negative. Next, he prescribed Gabapentin, initially 300mg 3x a day, but that didn't really help. After my first follow-up visit, he decided to have me try 600mg of Gaba 3x a day and make lengthening increments smaller, so he told me to do .2 mm 5x a day. This has definitely helped me quite a bit - I'd say the pain has gone down like 40-50% and I've been able to get through all of my lengthening ever since we made that change, although I'm not sure if its the Gaba or the reduced lengthening increments that's making the difference, or both. I'm going to continue to watch this though and hope for more of an improvement in the pain.

I feel like I've written a lot so far so going to end here; please feel free to reach out with questions or comments -- hope this has been helpful/informative so far

arent you a bit too early to be on gaba? nerve pain this early?

and dont worry about getting hooked on drugs.. thats not going to happen

good luck!

Congratulations and good luck!

Based on all of the accounts I've read here (+private convos) lengthening shouldn't feel super painful - please see your doctor if you're feeling pain! As for tightening, I'm not sure if there's a difference in morphology between genders (most accounts here are guys) but you shouldn't feel super tight until you're nearing 6cm (maybe 4, 5cm in your case because you're petite. There's a correlation between how much you can lengthen and your baseline height it seems.)

Wishing you all the best on your journey

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Pain management post-surgery - this is something I'm still sort of struggling with, although it has gotten a lot better. I had the a pretty rough time doing lengthening in the first few weeks. I was doing .25 mm 4x a day. The act of distracting on my left leg was super painful (weirdly, i felt NO pain on my right leg) The pain would start during the lengthening session and last for 2 to sometimes 3 hours after lengthening, ranging from a pain level of 5 to even 8 sometimes. The pain was a really annoying dull but intense stretching pain, starting and staying in my thigh, but also it'd radiate throughout the rest of my leg too.  Going through this 4x a day was really exhausting - a few times I skipped the fourth session, and one day I just didn't lengthen at all. I know that was not a good idea but I just wanted a break from all the pain. I let Dr A know about this and he was super responsive and tried to understand the root cause. He first suspected a blood clot, so I got an ultrasound for that which came back negative. Next, he prescribed Gabapentin, initially 300mg 3x a day, but that didn't really help. After my first follow-up visit, he decided to have me try 600mg of Gaba 3x a day and make lengthening increments smaller, so he told me to do .2 mm 5x a day. This has definitely helped me quite a bit - I'd say the pain has gone down like 40-50% and I've been able to get through all of my lengthening ever since we made that change, although I'm not sure if its the Gaba or the reduced lengthening increments that's making the difference, or both. I'm going to continue to watch this though and hope for more of an improvement in the pain.

This is actually really interesting. I think in the near future we will have a lot more research into the lengthening process. Lengthening at smaller increments means less intense pressure on the muscles & nerves. Ab, is there a reason why you need to lengthen 1 mm in total per day? I know in the past I have read others lengthen 0.80 mm or even 0.66 mm per day. This might really bring down the pain and discomfort in your legs, although it will increase the amount of time the lengthening takes. I am no doctor though, so I am sure Dr. Assayag will have a more detailed response to this.

Good luck AB and congrats on starting the process.

Congrats and good luck ab96! You’re in great hands with Dr. A and team; hope the pain levels out and wishing you all the best.

Hey TheDream - that's a good question. I'm not totally sure why we chose to shoot for 1mm/day, but I suspect the reasoning behind it is that that's the theorized rate of bone growth per day based on research, so the 1mm lengthening rate early on might be necessary to avoid the risk of pre-consolidation. Dr A said I could do .75mm per day if I really wanted, but I really wanted to try for 1mm. I could be totally wrong about this though, this is just my guess

Hi PerfectBody - wow I wasn't aware of that correlation; fingers crossed I can be an outlier and achieve some more height I don't feel tightening during/after distraction as much as I feel this really irritating stretching pain. It feels like everything is getting pulled (which makes sense, because it is). Weirdly its only in my left leg - my right leg doesn' t experience any distraction pain. But its getting a lot better with the new changes we made to my lengthening routine/meds, so let's see!

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*** Update:*** As of today, I've distracted a total amount of 20.6 mm (2.06 cm)! I'm feeling really happy; I stood up on the walker today and compared my height with my mom and could immediately see a difference. it feels great to see tangible results! it wasn't a totally smooth journey getting to this amount because of the pain, but that's definitely improving; I'm really happy regardless and don't regret doing this at all.


@TheDream - I realized my earlier response to your question didn't make a whole lot of sense. Spoke to my PT about this and he said part of the reason we do 1mm per day early on is 1) definitely to avoid risk of pre-consolidation and 2) gain some leeway so that we can afford to slow down (without fearing pre-consolidation) later on once/if things start to get tighter, or you experience nerve issues or less than ideal bone growth. But it sounds like different doctors feel differently about this approach if you know that other LL patients have distracted at a slower rate early on.

@Serilium - hm yeah I think it isn't common to be on Gaba this early on, but it seems to be helping me with the distraction pain. I think maybe this is the sort of thing where the answer just is "everyone's different" or "everyone responds to lengthening differently". Thanks for the good wishes!

@LBGrowthSpurt - thanks for the good wishes! I agree I'm in great hands with Dr A and his team!

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PT, Flexibility, and how I manage everyday essential activities:

I thought I'd spend some time writing up how PT is going and what we're focusing on, as well as how I get around with the wheelchair to do everyday daily activities.

Physical Therapy -

Currently I'm doing PT 3 times a week.

When I was first discharged after surgery, my quads were super weak. I couldn't bend my legs at all, I couldn't let my legs dangle over the edge of the bed, and I couldn't lift up my legs on my own. So the first week after surgery, the way I got around was by scooting my butt and using my arms to move my entire body by scooting. I also used a "leg lifter" if I needed to lift my legs at all (for example, when turning). To get from the bed to the wheelchair, I'd have to place the wheelchair perpendicular to the bed and kind of back up into it from the bed by scooting backwards. Anytime I was on a wheelchair, I made sure that it had the leg rests up so that I could keep my legs straight, since it was painful to bend them. The scooting backwards approach was also how I used the bedside commode in the first two weeks post surgery.

The focus of PT in these first two weeks was to be able to bend my knee, start activating my quad muscles, and make sure that my hips and hamstrings were still loose and flexible. Pretty much all I'd do was, while reclining on my bed, I'd use a strap to pull in my leg and bend it at the knee. I'd also use the same strap to take my leg out to the side to stretch out my hips (or hip flexors, not entirely sure). We'd also work on the ability to lift my entire leg up while I was in the reclined position. I also worked on letting my legs dangle off the edge of the bed and the ability to kick them up while sitting on the edge of the bed. Knee bending was really tough for me in the first week after surgery, but miraculously, I was able to start bending both knees really well almost overnight mid-way through my second week, which was really cool. Once I could start bending my knees again, I feel like life got a lot easier.

Now, I'm almost week 4 post surgery. The focus of PT is still to make sure I can keep bending my knees, so I still do a lot of knee bends, but its also shifted to making sure I can also extend my legs and keep them straight (so no bend in the knee), since thats really critical. The ability to keep your legs straight comes from your hamstrings, which get tighter as lengthening progresses, so the idea is to get ahead of the game there. In addition to working on knee bends, we also focus a lot on being able to lift my leg up while Im in a reclined position without a bend in my knee. Another thing I should mention is that somewhere around week 2 I learned to roll over onto my stomach, which is really important, especially for Precice patients since we can't walk post-surgery. Lying on your stomach is really good for stretching out the hips and getting you all straightened out, so I try to do that a lot throughout the day (its also pretty comfortable). Last week I also got the chance to try out using the exercise bike at a really low resistance, which is great for both knee extension and bending, as well as giving you some cardio, so I hope to continue using the bike.

This week I finally started to feel the tightness that people describe from lengthening. Its not a crazy amount though. I'm finding a bit of resistance in my quads when I try to bend them (which was so easy for me last week) and I also have a lot of soreness in my left IT band area (side of the thigh and side of the knee), so I've ben trying to stretch that area out and ice it as well. I wake up pretty stiff in the mornings so I do like 15 mins of stretching in the morning to loosen up again. Once I do that, I feel pretty good/loose for the rest of the day.

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How I do some daily activities

Using the toilet - again, in the first 2 weeks post surgery, I mostly used a bedside commode (using the "backing up"/scooting approach I described above). This was because it was hard to bend my knees and I just didn't think it'd be an easy process to get to the bathroom and sit on the toilet. However, once I was able to bend my knees, I got more confidence to go to the bathroom. The method I use to get on the toilet is to wheel in close to the toilet, almost at a diagonal. Then, I put one hand on the seat of my wheelchair, other hand on a railing that we installed next to the other side of the toilet, I put my legs firmly on the ground, and basically lift myself out of the wheelchair and onto the toilet seat. I distribute weight in both my arms and legs so its not just my arms or just my legs that are doing the work. I highly recommend getting a wheelchair where you can remove the arms if needed cause that really helps with transfers. Another way to do this which I haven't tried yet is to use a walker (if you are allowed). So basically, wheel in close to the toilet, and then use a walker to get up out of the wheelchair, pivot, and sit down onto the toilet. I want to try doing this more because I'm allowed to use the walker for small transfers and I've been told that its good for me to start putting weight on my legs and standing.

Showering -

Again, showering got a lot easier once I was able to bend my legs. Before I was able to bend my legs, I did need a bit of help from my nurse to get into the tub from my wheelchair. I highly recommend getting a shower bench which kind of extends out of the tub, so that you can trasfer onto it from your wheelchair and slide in. Before I could bend easily, I put another stool in the tub which I could rest my legs on. I also use a detachable shower head so that I can shower while sitting on the bench. Once I was able to bend my legs, it got a *lot* easier to transfer in. I wheel up to the bench and basically put my legs on the ground and use my hands and legs to shift my body onto the bench and just slide in.

Hope this was informative; let me know if you have any comments or questions!

Wow! 0ver 2 cmon already ab96? Time flies, I guess! (Easy for me to say I know since you’re doing all the work 😆). Good job 👍 and thanks fo4 all the deets - very informative. Wishing all the best for you as your journey continues 😊

Quote from: ab96 on May 05, 2021, 09:34:21 PM
 I'm feeling really happy; I stood up on the walker today and compared my height with my mom and could immediately see a difference. it feels great to see tangible results! it wasn't a totally smooth journey getting to this amount because of the pain, but that's definitely improving; I'm really happy regardless and don't regret doing this at all.

keep up the good positivity 🖐🏻🖐🏻