Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: ab608 on May 04, 2021, 12:01:56 AM
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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 :)
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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!
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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.
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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.
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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
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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!
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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 😊
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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 🖐🏻🖐🏻
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Thank you @LBGrowthSpurt and @Serilium!
Also, @Serilium, I got some intel re: your question about Gaba from the doctor - he said "Gaba is used not only for nerve pain, but also as an adjunct for somatic pain. It works with the Tylenol and Celebrex (which are the first line pain meds prescribed post surgery) to potentialize their effect".
Hope that helps
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Is Precice 2.2 already available in the US or is Assayag using stock?
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@V21 it's available in the US
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Also, @Serilium, I got some intel re: your question about Gaba from the doctor - he said "Gaba is used not only for nerve pain, but also as an adjunct for somatic pain. It works with the Tylenol and Celebrex (which are the first line pain meds prescribed post surgery) to potentialize their effect".
Hope that helps
Tnx
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Hey ab608 - how ya doing? Hope things are going well for you! 😁💪
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Hey ab608 - how ya doing? Hope things are going well for you! 😁💪
Hey! Thanks for checking in. The last week or so has been interesting, but overall things are going really well!
For some context on where I am in distraction, I'm 38 days post surgery as of today and I've distracted around 2.9 cm. I have another follow-up with the doctor this week where we'll get to look at the X-rays again.
I've been doing really well with bone growth, so I hope that trend continues. I definitely feel like all my surgery-related pain is gone (long gone). Mentally I feel 100% back to normal - I've started working again as well (I work remotely). I've had good and bad days with work, but again, on the whole I think it's getting easier. My team is really kind and accommodating as well, so that has helped. My sleep quality was pretty bad these last two weeks, so I had been taking a lot of naps in between meetings and doing work over the weekend to compensate, but over the past few days I've been sleeping better, so I don't think I'll need to nap as much during the day this coming week.
Regarding pain and muscle tightness, we had an interesting revelation earlier this week that shed some light on my pain - turns out I've been accidentally lengthening my left leg more and faster than my right leg -__________- lol..which may be why I've found distraction so painful on that leg. We found this out because, in addition the low-grade distraction pain I was still having, I also had a lot of tightness on the side of my left thigh (the IT band area) and pain on the sides of my left knee. When I stood up on my walker, I could see that my left knee was rotating inwards making my left leg look kind of crooked/not straight. My PT told me to text Dr A right away, so I did, and he told me to come in ASAP because he suspected subluxation of the knee (which I think is kind of like dislocation? not totally sure). I also noticed that my left leg looked kind of longer than the right - it was subtle but I definitely thought I could see a difference and Dr A agreed, so he took some X-rays. The X-rays didn't show any subluxation but did show that the left leg was longer than the right by a couple millimeters. He said one reason for the knee curving inward could be because of the tightness in my IT band + other muscles on the left leg, since it's the hip that controls rotation of the knee. That made sense to me because I felt like my knee was curving inward to avoid the pain that was brought on by the tightness on the side of my thigh when I'd rotate my hip to straighten my leg. He told me to slow down lengthening on my left leg to .5 mm per day and to keep going at 1mm on the right to let the right leg catch up. So, I've slowed down on the left at least until my upcoming appt at the end of this week.
The slowdown has been really nice - the muscle tightness lifted pretty much the next day and I've found it a lot easier to keep my knee straight. I've also felt much less pain on the left leg since slowing down, so its nice to get a little break :) I'm really curious about how much, if any, pain I'll feel once I return to 1mm distraction per day on the left, once the right has caught up.
As to how I could've lengthened more on the left than right -- the magnet in the NuVasive ERC (remote that does the lengthening) is really powerful, and the device says to keep both legs at least a foot apart before lengthening. I guess I must've been careless a few times. The device makes me lengthen my right leg first, and then left, so its possible that I kept my left leg too close while lengthening the right, causing the remote to also lengthen my left leg with it :'( so be careful all of you!! don't be like me lol. hopefully my experience will help you troubleshoot if any of you have similar pain or are noticing similar symptoms when you start this process.
As always I'm super grateful for my PT, and the doctor and his team for being super responsive and calling me in to investigate ASAP. On the bright side, PT has been going really well, I don't have any other unexpected areas of muscle tightness, and I also got to try walking in the pool this week! It felt great to stand and practice walking, especially since you can't weight bear on Precice 2.2.
Will write up more on this tomorrow - in the meantime, feel free to ask about anything I haven't mentioned if you're curious.
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Update:
42 days post-surgery
Distracted 3.4 cm on right leg, a little bit more than that on left leg (see post above ^)
Pain level generally: for the last week and half, it's been in the 1-2 range generally since I slowed down distraction on my left leg. My right leg doesn't hurt when distracting, but both legs do ache from time to time. The worst that the aching gets is 3-4 level pain, which happens at night usually.
Muscle tightness/flexibility: I'm still doing ok in terms of flexibility. Hamstrings are still ok which is good; I don't have much trouble straightening my legs. My quads are getting a little tighter but I'm still able to bend 90+ degrees. My hips are fine too. My main issue is tightness in the IT bands on both legs and knee pain (side of the knee especially). I could really feel that tightness when standing up in the pool, so I need to spend more time stretching the IT bands.
Video of me walking in the pool: https://imgur.com/MlYEEAb
Highly recommend getting in the pool asap if you're doing Precice since it helps you practice your walk. It also made me acutely aware of which of my muscles were really tight, since its hard to tell that when you're sitting/reclining/lying down 24/7. As soon as I started walking, I could really feel tightness on the sides of both of my knees, which I don't feel as acutely when sitting/lying down. I definitely felt that the tightness was hampering my walk. I told my PT that I tend to sleep on my side and bend my knees at night; she said that this was probably contributing to my knee tightness and that I should try to either sleep with my knees straight using the CKDs they gave us, or to compensate by trying hard to keep my legs straight during the daytime. This brings me to my CKD usage...
CKD usage - Not sure how widespread this is, but the LL team at Sinai Hospital makes their femur lengthening patients custom leg braces which are to be worn up to 8 hours per day to help with keeping your legs straight and prevent your hamstrings from getting too tight (they'll naturally get tight due to lengthening, but I think the brace helps to mitigate it). I've been trying really hard to keep both CKDS on at night but man it's so tough. I try to wait till I'm really sleepy to put them on, but as soon as I put them on, my sleepiness evaporates because its so uncomfortable lol. Nevertheless I keep trying, and right now the most I can keep them on is 1hr 15 mins before my legs are screaming at me to take them off. I definitely am not at the point where I can sleep with them. At the moment I wear them throughout the day in intervals, as much as I can. Hopefully I'll get better at this! If you're a former Sinai patient and have any tips on this, please let me know!
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Hello fellow femur lengthener! I am about a month behind you; my surgery was May 6. Any tips? I am also a Precice 2.2 femur patient. Any hints or tips for sleeping? The pool video looks cool!
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Hello fellow femur lengthener! I am about a month behind you; my surgery was May 6. Any tips? I am also a Precice 2.2 femur patient. Any hints or tips for sleeping? The pool video looks cool!
hi! congrats on starting your journey! honestly sleeping has been up and down for me and i'm still trying to nail it as well..the first few weeks after surgery i actually slept really well, despite only being able to sleep on my back, i think because i was new to all the medication and it made me pretty drowsy (especially the Oxy, which I'd take at night). but since then my sleep quality has been pretty spotty, with some good nights and sometimes a string of bad nights.
a couple things which have helped me:
1) being able to lie on my stomach - i was able to do this by week 2/3 and it was a real game-changer for sleep for me. around week 4-5 i also felt comfortable sleeping on my side, but i'm trying to wean myself off of this now because i tend to curl up on my side and that makes my knees really tight and painful in the morning.
2) taking reliable pain meds before sleeping to minimize waking up in pain at night. when distraction was pretty painful, i'd definitely take Oxy before sleeping. idk what your post-surgery meds are, but if you've been prescribed Tylenol, maybe you could try taking Tylenol PM? it didn't really work for me but i feel like that was because i was in a phase where my pain was a little too strong to be overpowered by Tylenol PM. now that the pain is in check, i might try that again. Victor from Cyborg4Life also has a video about sleep where I think he mentions some amino acid supplement that helped him with sleep; i haven't tried it, but maybe its something you could look into: https://www.youtube.com/watch?v=_yHpTeitlWs
if i come across anything else that helps, i'll let you know!
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Thanks for writing your diary.
I was wondering how much were the costs of surgery and physical therapy?
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Thanks for writing your diary.
I was wondering how much were the costs of surgery and physical therapy?
Surgery for Precice, both femurs, is around $70k and PT at Sinai Hospital I think is around an additional $6k. Would recommend emailing Dr Assayag's team to get an exact quote.
If you have private health insurance, its worth asking them what their policy is around physical therapy. Some insurances will cover PT (typically for a set number of visits) if the provider is in-network, without any need for prior authorization. I'd also recommend asking them about their policy around home health aides/private duty nurses as well.
There's 2 other physical therapists in the area who were formerly part of Sinai's PT team - one of them works at another practice and accepts select insurances, and another works independently (self-pay) and can come to your home provided you live within an acceptable distance, so those are two more options you can ask Dr Assayag about and get quotes from as well.
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Update - I've distracted 4.5 cm on left leg, 4.2 on right
Pain - I've felt very little to no pain over the last week.
There's definitely more stiffness and tightness, especially in my quads, and I'm very stiff and uncomfortable in the mornings, but that's about it. The only other pain I feel is when I'm stretching my quads or during PT, but that sort of pain is short-lived and goes away as soon as I stop stretching.
Recently, to relieve the discomfort from tightness in the morning, I've been taking hot baths as soon as I wake up. Soaking in the hot water really, really helps me feel normal again, and I do a lot of stretching as well - so, keeping my legs straight and pushing them against the tub to stretch my hamstrings, I try to stretch my calves by doing this modified calf raise stretch, I do a lot of knee bending, and I try to sit pretzel style in the tub as well (I can't bend my knees as much anymore so I can't do this stretch that well, but I still try). I feel like I enjoy stretching in the water more than on land now, and I feel like I'm able to push myself more in the water than on land, so I might try to spend more time in the pool.
Things are starting to feel different now that I've distracted this much. My legs definitely look longer to me, and they feel very new/strange! I feel like I have less control over them, since I'm used to them being shorter.. it's very interesting.
Flexibility - I don't think I've lost a significant amount of range of motion yet in any of my muscles, but again, quads are getting tighter, I'm starting to feel my hamstrings get tighter, and I think my hips aren't as loose as they were before. But the amount I've lost isn't serious or severe yet, so I'm continuing to distract at 1mm/day. One thing I've noticed is that my left IT band, or basically the side of my left thigh, is pretty sensitive and can start being painful pretty quickly if I stretch it in the wrong way or do something to make it mad. I've noticed that using the exercise bike can anger it - lately every time I use the bike, the next day the side of my thigh becomes really painful any time I try to move my leg, and I have to wrap it with an ACE wrap for the whole day until it calms down.
ACE wraps have been really helpful throughout this process too. Sometimes my knees can be tight and painful, or the side of my thigh as I mentioned above. Compression with the wrap really helps to relieve the pain/tension.
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Holy crap, it really feels like 1-2 weeks ago you began your LL journey. I'm happy to hear you're having a painless experience, keep it up!!
Good luck on the last ~1 cm!!! You got this!
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Holy crap, it really feels like 1-2 weeks ago you began your LL journey. I'm happy to hear you're having a painless experience, keep it up!!
Good luck on the last ~1 cm!!! You got this!
Thanks @PerfectBody and right back at you!! You can do this.
And yup, time flies! I started the diary a month into distraction so that definitely skews things, but still, I don't know where the time has gone/how I'm already at 4cm :O
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Update - we're at ~ 4.9 cm on the left leg and ~ 5.4 cm on the right (i accidentally switched the measurements of the legs in last post)
We're slowing down to .75mm on the right leg for the next 2 weeks because the regenerate is not as dense on one of the sides. I'm going to focus on increasing calorie intake - work has been pretty busy these last few weeks and I tend to eat less when that happens, so I wonder if that's the reason.
Both legs are still a little off from each other in terms of length, all due to the fact that I accidentally lengthened one of them more than the other, which I talked about in an earlier post. The plan is to even them out at the end, since slowing down one of the legs now just to even them out could risk premature consolidation.
In terms of flexibility, weirdly I feel tighter on my left leg than my right, which has more length. My biggest issue is quads, so I stretch them *a lot* throughout the day, as much as I can. My left hamstring is also getting tighter, more than my right. I go to the pool more often now which is a huge help, especially since I enjoy stretching more in the water.
One of these days I'll post some links to all the things I've used throughout this process that I've found helpful, in case its of any use to anyone :)
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Nice job, ab608! You seem to be chugging right along at a good clip 👍; I might have missed this, but what’s your goal? Curious about how you’re dealing with the weight bearing limits of precice 2.2; how’s that going for ya? You able to get around ok?
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Nice job, ab608! You seem to be chugging right along at a good clip 👍; I might have missed this, but what’s your goal? Curious about how you’re dealing with the weight bearing limits of precice 2.2; how’s that going for ya? You able to get around ok?
Thank you! For now my goal is 6.5 ish cm, but I'm going to monitor and see how I'm feeling - I might decide to go for less or more
Yup, I've been getting around fine so far. What makes it easy is definitely having my family with me - I'm super fortunate and grateful to have them. They help with all the big stuff like food and getting to/from appointments. We're also staying in a small apartment, so it's not hard to wheel around and do what I need to do.
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How confident do you feel about the nail in your daily life? I'm terrified I'm going to bend it or break it lol. I'm 74 kg though.
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How confident do you feel about the nail in your daily life? I'm terrified I'm going to bend it or break it lol. I'm 74 kg though.
Haha, initially I was terrified too.. a week or so after surgery, my brother had to practically force me to get off the bed and practice transferring and start moving around/doing things. Once you get your transfers down, its really a piece of cake. What really helped me is getting a wheelchair where you can remove the armrests, which I think most wheelchairs do these days anyway. That makes it really easy to slide off and on things from the side of the wheelchair. All you have to do is use your arms and legs to push and slide off. I thought it'd take a lot of arm strength, but I have really weak arms and I can do it lol, so its really not too bad. I'm never really worried about breaking the nail. Before surgery, get your own wheelchair from Craigslist or something and practice all of your transfers wherever you'll be staying.
I'll put some links to Youtube vids I used to practice transferring, along with links of things I've used throughout the process, in a later post if that helps!
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Thanks, this would be very helpful!
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Haha, initially I was terrified too.. a week or so after surgery, my brother had to practically force me to get off the bed and practice transferring and start moving around/doing things. Once you get your transfers down, its really a piece of cake. What really helped me is getting a wheelchair where you can remove the armrests, which I think most wheelchairs do these days anyway. That makes it really easy to slide off and on things from the side of the wheelchair. All you have to do is use your arms and legs to push and slide off. I thought it'd take a lot of arm strength, but I have really weak arms and I can do it lol, so its really not too bad. I'm never really worried about breaking the nail. Before surgery, get your own wheelchair from Craigslist or something and practice all of your transfers wherever you'll be staying.
I'll put some links to Youtube vids I used to practice transferring, along with links of things I've used throughout the process, in a later post if that helps!
hahaha yeah, I'm already at home practising transfers, going to bed from my office chair. I have even weighed how much weight I put and its like only 10 kg. Besides, I think the weight goes in the calves during the transfer, and not on femurs (I keep a "seated" position". Thank you very much for your answers, I do am terrified of bending the nail. I even lost 10 kg to be as light as possible lol
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hahaha yeah, I'm already at home practising transfers, going to bed from my office chair. I have even weighed how much weight I put and its like only 10 kg. Besides, I think the weight goes in the calves during the transfer, and not on femurs (I keep a "seated" position". Thank you very much for your answers, I do am terrified of bending the nail. I even lost 10 kg to be as light as possible lol
Of course! Although, just remember that in the beginning, transferring is a bit difficult because your quads have lost a lot of their strength, so its hard to bend them, hang them off the edge of the bed/chair/etc. I got around this by doing a lot of scooting, so i'd scoot back into the wheelchair. It was tough though - once i regained quad strength (took around 2 weeks), life got a lot easier. My advice would be to work really hard on quad strength immediately and consistently after surgery.
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Thanks for this amazing post！ I’m also moving to Baltimore next month. May I ask your age?
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Thanks for this amazing post！ I’m also moving to Baltimore next month. May I ask your age?
That's great! Are you also getting it done at Sinai? Feel free to PM if you have any specific questions. I'm 24
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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
The 1mm/day actually comes from the rate of nerve growth. If you distract significantly faster than this, there is potential for nerve damage.
Your bones actually consolidate at 0.25mm per day, hence why there's a "consolidation" period after distraction for the bone growth to catch up. Unless you're a fast bone grower, 0.5mm per day is usually a safe distraction rate.
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Thanks, this would be very helpful!
Here's a list of things I've used throughout this process, things I haven't used but would prob be useful, how I do my transfers, things I planned for before the surgery -- its an anonymous spreadsheet so please feel free to view:
https://docs.google.com/spreadsheets/d/1y9FBpearMEqThe0luRJ4yZKk1eGEi6wVVWGgdbb8k6o/edit#gid=1160145484
It's a work in progress, so feel free to let me know about things I didn't mention if you remember. I'll keep updating it as I think of more things.
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Update - 59.5 right leg, 55.5 left
Last week I was feeling a lot of weird sensations in my legs, like prickling on the soles of my feet, toes, sometimes burning in my toes, and this sensation of tickling/feeling like a bug was crawling on my foot, shin, thighs, etc. The sensations were pretty frequent, like every 1-2 mins and sometimes less than that. I also felt this funny feeling for prolonged periods of time on my shins/lower leg as if it was on the verge of falling asleep, but didn't quite get to the pins + needles stage. This was irritating at night and made it hard to sleep. I let Dr A know, and was told to retract 1mm on both legs and take a break from lengthening for a day. I asked to not lengthen the day after either because the sensations ramped up that day. After those two days, the frequency of the sensations went down by a lot, so we decided to resume lengthening at the rate of .5mm till the next appt which was that Friday.
Luckily none of those sensations intensified into numbness or muscle weakness, because everything seemed fine when when we examined my feet at the appt. I could wiggle my toes, push and pull with my big toe, could feel touch in diff areas, so feeling relieved about that :) I was told that I could go back to lengthening both legs at .75, but I was still feeling the weird sensations here and there so I asked to stay at .5mm for a few more days until I felt like everything was okay, which was fine by the doctor, I guess because there's very little risk of premature consolidation at this stage of the game. My left shin isn't completely numb, but it does feel like it's not 100%. However I guess the amount of feeling I've lost is extremely minor because I could still feel touch in different areas of my shin during the exam at my appt.
As of now, things are feeling a lot better so I'm now distracting .75 on both legs, and hoping that everything will be okay! I still felt that annoying feeling of my leg being on the verge of falling asleep last night, so I decided to wear compression socks to see if it'd help / maybe its a circulation issue. I think they actually ended up helping - not totally sure, so will keep trying them out
At my last appt, my the regenerate on my right leg was not as dense on one of the sides, which prompted us to slow down. Thankfully at this appt, it was looking a lot better. Apparently its still not as dense as the regenerate on the left, but not to the point where its concerning.
In terms of PT, everything is still the same. I do all the same exercises as when I first started lengthening. I go to the pool a lot more now and I use the exercise bike more too now, to help break up the routine. I've gotten a lot of flexibility back because of the lengthening break I took last week + slowing down to .5, so I'm actually feeling really really good, but it's bittersweet because that break cost me some time. But I guess that's par for the course, and I'm happy to have a bit more peace of mind re: the weird nerve sensations. :)
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Sounds like you experienced a bit of nerve pain! Glad to see you found a work-around, it's not fun.
I got a lot of that at the very beginning. It died down for two weeks but now if I rub my legs I can feel them sparking/firing up again 🙃 I might take one from your book and not lengthen tonight, it's very unpleasant lol.
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Sounds like you experienced a bit of nerve pain! Glad to see you found a work-around, it's not fun.
I got a lot of that at the very beginning. It died down for two weeks but now if I rub my legs I can feel them sparking/firing up again 🙃 I might take one from your book and not lengthen tonight, it's very unpleasant lol.
that sounds rough - i hope a day off helps! nerve irritation is weird - i don't have a good sense of how much you can wait/push it with lengthening before risking something serious. it's never fun to slow down, but at least it gives you peace of mind.
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Update - we're at ~6.8 on the left and ~7.0 on the right leg now. 91 days post surgery!
New (and hopefully final) lengthening goal - 7.5cm (we're almost there!)
I'm currently distracting 0.75 daily (although a couple weeks ago, I found it better to alternate distracting between 0.75 and 0.5 to keep the weird nerve sensations at bay). So far things have been fine, although I do feel more pain now on a daily basis than compared to before. I'll feel random painful sensations throughout the day that don't really last more than a few seconds, and maybe go up to 2-3 on the pain scale. I don't feel as stiff anymore since I'm distracting at a slower rate. I think my stiffness was at its worst when I was doing 1mm per day.
My muscles have gotten tighter, but they still have pretty good ROM (slowing down really helped with this since i regained rom). The only thing that's gotten pretty bad in the last 2 weeks is my hip flexors. My PT says I have lordosis - not severe but its definitely there. When I lie down there's a pretty big gap between my lower back and the bed, and when I stand in the pool, my back hurts a lot and is curved inward. My back hurts even when not standing - I find it uncomfortable to sit without something supporting my lower back and it takes conscious effort to not slouch a lot. Obviously everyone slouches a bit, but i feel like my slouch has gotten worse. The solution is to lie on my stomach more and do more hip stretches, so I'm trying to do that as much as I can. I've learned to put a pillow under my hips when I lie on my stomach to align my back and correct the lordosis that's happening so that I can give my hip flexors a proper stretch.
Another thing I've noticed is clicking in my right leg. Sometimes when I move my leg, especially from the hip, I feel a clicking sensation. At one point I could even hear tiny popping sounds every time i moved my leg. I also can sometimes feel the clicking when I'm distracting, so I feel like it must be related to the nail. I got some last minute x-rays because I was worried about this, and the x-rays didn't show any bend in the nail or any issues with the hardware, so we're not sure what's going on. I'm happy that there's no issue with the nail because I feel like at this stage, with the rod extended at 7cm, it'd be easy to bend it if I inadvertently put too much weight on it. I walk in the pool a lot and sometimes try out exercises in 3.5ft, so I was worried that doing that may have put stress on the nail. I really don't want to take risks with it so I think I'll just stay in 4ft from now on. Let me know if you've ever experienced any clicking with Stryde/Precice! I hear its common so I'm not too worried, but its definitely made me more cautious at this point.
In terms of self-stretching, lately i've been going to the pool and using the exercise bike a lot (on top of just normal stretching). It really helps me feel better and maintain flexibility. The priority at this point is getting to 7.5cm as safely as possible and evening out my legs. I got a standing x-ray at my last appt to check out the overall difference in my leg lengths, and we found that the difference between the two has gotten smaller. This was surprising to me because they still visually appear like different lengths (its subtle but there imo), and I also feel uncomfortable when standing, like I can feel that my left leg is longer than my right. Its possible that how I feel doesn't match with the x-rays because of the accuracy/margin of error of the measurement software/etc, i have bad posture at the moment because of the lordosis, also maybe there's some sort of placebo effect going on because now I know that my legs are different lengths and I'm more inclined to feel that there's a difference now that I'm aware. Since all of this stuff is in play, the plan is to just get both legs 7.5 cm and then finetune - so lengthen/shorten each leg as needed until I feel even when standing and there's no visual difference in the legs.
It has been a *minute* since I first started this process, so it's really crazy to be wrapping up lengthening. Crossing my fingers that I can get to 7.5 by my next appt next week and that everything goes smoothly :)
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Update - we're at ~6.8 on the left and ~7.0 on the right leg now. 91 days post surgery!
New (and hopefully final) lengthening goal - 7.5cm (we're almost there!)
It has been a *minute* since I first started this process, so it's really crazy to be wrapping up lengthening. Crossing my fingers that I can get to 7.5 by my next appt next week and that everything goes smoothly :)
Wow! Time flies, eh? I’m sure it hasn’t for you since you’re doing all the work! 😁. Happy that the lengthening is almost done and also hoping everything goes smoothly for you as you wrap up the distraction phase. Best wishes!
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Wow! Time flies, eh? I’m sure it hasn’t for you since you’re doing all the work! 😁. Happy that the lengthening is almost done and also hoping everything goes smoothly for you as you wrap up the distraction phase. Best wishes!
Thanks! :) Will post x-rays after my next appt in a few days.
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All done! Now in consolidation - should be 4-6 weeks for partial weight-bearing, and then another 4-6 weeks from there to walking without any assistance.
I hit 7.5cm a few days ago -- I think on Thursday (98 days since surgery) -- and since then, I've just been adjusting my right leg to get it to the same length as my left. It's been three days since Thursday and I think both legs look pretty even now, and I feel much more even when standing up on my walker now. I think I'm going to call it and just closely monitor how my legs look over the next week. The doctor said that if I still want to lengthen / shorten in a week's time, I'll be able to, since the bones won't have consolidated that much.
I'm feeling really happy - overall the journey was pretty smooth. The only big hiccup was that the first month of lengthening was pretty painful on my left leg, but that's because I was accidentally lengthening it too much. If you're using a NuVasive product and the second gen of the ERC, beyond making sure you keep your legs a good distance apart while lengthening, keep monitoring your leg lengths, especially if you're small like me. A lot of times my X-ray measurements didn't line up with how much I thought I had lengthened, and I have a theory that it's an ERC issue, because even after catching the issue of one leg being longer than the other and making sure I was keeping my legs far apart during lengthening, sometimes I could feel my other leg lengthening (basically I'd feel the motor in motion) while having the ERC on the other leg. I know the magnet is really strong, so despite keeping the legs apart, I still felt like the ERC would sometimes lengthen the other leg unintentionally. It's an unproven theory but seems likely to me.
Also, if you ever have to lengthen more on one leg for some reason (like correcting an imbalance), its good to keep a separate journal where you keep track of how many lengthening sessions you did per day + per leg and what you think the overall lengthening amount is so far, because the ERC doesn't allow you to skip sessions on one leg. So if you only lengthen one leg in a session, it'll still keep the counter going for the other leg, making it look like you lengthened both when you only did one. Also, keep in mind that the X-ray measurements have some margin of error, so always good to have some way of comparing how much length you think you got vs what the x-ray says you got. Just keep my experience in mind - if one leg is finding lengthening a lot more painful than the other, ask your doctor if he/she thinks this is what's going on. The act of lengthening using the ERC should not be painful, so definitely speak up if you're finding it very painful.
Now the game plan is to work really hard on both stretching everything out and strengthening my core, glutes, quads, and whatever else i can do. I still have the anterior pelvic tilt and my quads and glutes are pretty weak, so I'm really eager for any non weightbearing strengthening exercises for someone who did femurs. If you have any, please share! I'm thinking of using the leg press for quads, glute bridges for glutes, a lot of different core exercises, a lot of the exercise bike, squats in the pool, and all that kind of stuff. I'd love to make the transition to walking a little smoother by really working hard this month, although I don't know if that's a pipe dream. I know there's a lot of great diaries of past LL'ers who are walking now, so going to take some time to look through those for tips.
Not the best quality (my phone camera sucks) but here are the x-rays:
https://imgur.com/a/3hghmgd
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(https://imgur.com/a/glFg8zg)
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Congratz on your 7.5 cm achievement. I am really happy for your gain. Keep us posted on how your recovery is coming along?
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Thank you! I will definitely update.
Right now I'm focusing on strengthening and stretching. Despite having really good ROM when stretching on my bed, when I stand on my walker, I'm finding that my left leg feels really tight, while my right leg feels loose and flexible. This makes me feel weird when I stand; I feel kind of lopsided. So I think I need to put more time into stretching out my left leg more -- especially the upper part of my hamstrings. I also feel weird when I stand with my legs together -- it makes my back arch more -- so I have to work on stretching those adductor muscles as well.
In general, I've been making an effort to put more weight on both legs. I barely stood on my walker during lengthening, so I'm trying to do that more now to get them used to having weight on them (obviously taking care not to exceed 50 lbs on each leg). Will share links to exercises I'm doing soon, in case it's helpful!
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Update - almost 2 weeks into consolidation
I was pretty flexible and maintained really good ROM throughout lengthening, so regaining flexibility hasn't been a huge focus for me for consolidation, but its still really important nevertheless. I do feel tightness/stiffness when I don't stretch regularly, even though I still have good ROM. I've been trying to strengthen more, but have been finding that tough. The act of putting more weight on my legs and forcing my muscles to work causes pain afterwards, and I have to be careful to not overdo it and space out the strengthening. Standing feels really weird too - my left leg feels super tight when I stand up with my walker, which is weird because its very flexible when I stretch it on my bed. My PT says it might be because the weight is causing my muscles to wake up and stay in a contracted position - basically the muscles are still getting used to holding weight and are going to feel weird at first.
My PT and I also discovered why I feel so "off" and uneven when I stand. Prior to surgery, my knees would naturally hyperextend, which is common for women. Now, after lengthening, my right knee has retained that ability to hyperextend when standing, but my left knee doesn't. This lines up with what I felt in lengthening - towards the end, my left knee began to feel stiffer than the right. This could be because my left quad is weaker than my right quad, and the quad allows for hyperextension of the knee (or something like that). Hoping that both knees ultimately end up the same way so that I can feel even when I stand.
I now take my pain meds on an as-needed basis. The first week of consolidation, I barely needed pain meds, but this week I took them a couple times to deal with post-workout pain. My legs have been achy and annoying so I've been taking the the meds for that.
My hip flexors are still really tight, so my lower back is still very arched. Trying my best to lie in prone position, stand more, do different hip flexor stretches, but they're still really tight and my back is really weak. It makes sleeping and working tough because my back is so arched, etc. But trying to stay positive and keep stretching it!
To be honest I'm a bit nervous about what it's going to be like to start walking again. I think it's going to take a while for my legs to adjust to holding my weight and to get rid of the pelvic tilt. Oh well I guess, best not to think too much about that and just keep stretching and strengthening :)
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Hi there, congratulations on all your progress to date in your LL journey! It sounds like everything you have been doing and your positive attitude have gotten you this far and you are doing great. I am near the end of my first month post LL surgery, and because Covid/Delta is rampant in my area, am now planning to do PT on my own for a while. I am also Precice 2.2 and going for 7.5-8 cm. Really looking forward to seeing what exercises and stretches you have been doing to date. I am mainly getting mine from YouTube at the moment. Anyway, good luck with consolidation and before you know it you will be walking tall and unaided again!
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Hey! Congrats on starting the process - excited for you!
Here are the stretches I've done throughout this process (on the stretches tab): https://docs.google.com/spreadsheets/d/1y9FBpearMEqThe0luRJ4yZKk1eGEi6wVVWGgdbb8k6o/edit#gid=1128726750
I'll update it with strengthening exercises later today.
A stretching strap and resistance band would be really useful to have. Also highly recommend getting a massage table if you have the space for it (unless your bed is pretty high off the ground) because it really helps with stretching your hip flexors. My hip flexors are really tight right now and I wish I had gotten a massage table earlier since the added height makes the stretches like the Taylor stretch a lot more effective, in my opinion.
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Many thanks ab608, these are super useful! And thank you in advance for the strengthening exercises. Great, I will get a stretching strap and resistance band. Is the latter a looped/closed band? I probably don't have enough room for a massage table unfortunately. Yes, same here with hip flexors.
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Had my x-rays yesterday and somehow i'm miraculously 100% weightbearing now?!
x-rays: https://imgur.com/a/fvOx1Z6
Dr A says i have 3/4 cortices bone growth on one leg, a little less than 3 on the other which is a pretty good sign. If I remember correctly, I could start walking, but they still want me to walk with assistance for the next month since muscles are weak and the regenerate is pretty weak.
It's been exactly 4 months since surgery and a little less than a month since I finished lengthening, so this was really unexpected but welcome news - I thought it'd be at least another month till I was full-weightbearing. But definitely still have to take it slow and be very careful.
I got out of the wheelchair for the first time yesterday and tried walking with both a walker and crutches - apart from a bit of stiffness in my left leg and stress on the front of my foot, it honestly felt pretty normal. But my legs are definitely not used to holding my weight anymore, I feel my weight so acutely now, so a lot of strengthening is necessary. Will update more with exercises and videos soon!
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Congratulations, ab608! Can't wait for your updates. How's your pain? Are you still taking painkillers after your workout? I hope your sleep quality has improved also! :)
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Congratulations, ab608! Can't wait for your updates. How's your pain? Are you still taking painkillers after your workout? I hope your sleep quality has improved also! :)
Thanks! Pain is fine most of the time but yeah, over the last week I've still been needing them after workouts. I typically take 1-2 tylenols. Sleep quality has also improved! My PT let me borrow his massage table to stretch my hip flexors from a taller height and it's truly been a miracle. My hip flexors are so much looser and my back is less arched, so I'm able to sleep better now!
Here are some videos of me walking with and without walker (i know i'm not supposed to, so i *rarely* walk without it, but my legs have gotten stronger so i felt comfortable taking a few steps): https://imgur.com/a/gEUqoSm
There's also a video of me going from sitting to standing from a pretty high seat height - that was taken a few days ago. Today I found out I'm now actually able to stand up from a lower seat height (my desk chair) but I practiced it so much that by the time I started taking these videos, my quads were literally fried and I couldn't do it for the video. But i hope to post it later!
Walking feels extremely weird - my left leg especially is as stiff as a board. literally feel like i have a wooden leg. and walking gets harder the more i work out obviously, because the weight training makes everything stiffer. but i really think the leg press, squats, resistance bike, etc is helping my quads get stronger. its hard for me to stand for more than 3-4 minutes at the moment because of how stiff and uncomfortable everything feels, and i can't really walk that much, even with the walker.. maybe like 5 mins max as well. but i'm sure with practice the stamina will improve.
Not sure if it's as apparent in the videos, but yesterday my PT noticed that when I walk, my right leg swings in a lot, towards my midline. He thinks its because my outer thigh muscles are weak and my inner thigh muscles overpower them and pull the leg in a lot, so he told me to strengthen the outer thigh muscles as well. So to work them out, I've been youtubing "outer thigh workout" and doing one of the 8 minute videos twice a day - hoping that improves things!
Beyond strengthening my legs, my routine is pretty much the same as it has always been. I take Vitamin D (5000 units) and Calcium (1500 mg) everyday and eat a lot. At my last appt when I got my X-rays, I found out I gained 6 lbs since surgery, so I wonder if diet/caloric intake played a really big role in the rate of my bone growth.
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wow your proportions look great/ And your walking is not bad at all for being only 3 months post op. You're well on your way. Also your scars are non-existent. I have dark skin so hopefully mines are not noticeable.
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Congrats ab608! Your walking looks great!…esp for the limited time since your surgery. So happy for you. 😊
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Thank you both!! @Growing so my phone camera is very forgiving - I do have noticeable scars, and they're not very pretty. but at the moment I'm not too concerned about it - that's a later problem haha. i think i'll start taking care of them after removal because i think they do the incisions in the same places?
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Your proportions look great! Thank you for the thread.
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Your walking looks great! Congratulations on doing so well and on making it this far. Almost there!
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Thanks for making this diary, ab608!
What would be your advice if you wanted to do nail removal w/ Assayag using insurance? I'm within driving of Assayag but my state doesn't have PPO insurance in the individual market, I'm not sure what to do or if there is any insurance I can pick
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Thanks for making this diary, ab608!
What would be your advice if you wanted to do nail removal w/ Assayag using insurance? I'm within driving of Assayag but my state doesn't have PPO insurance in the individual market, I'm not sure what to do or if there is any insurance I can pick
Hm, I don't know a lot about buying insurance as an individual, so I'm probably not the best for advice on this. I guess if PPOs aren't an option, I'd probably check to see if the plans that are offered in your state consider Dr Assayag an in-network doctor? I'm assuming that just because he's out of state for you, that doesn't mean a plan will definitely consider him out of network, but I could be wrong.
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Yeah hm... What will you use for nail removal? Pay Assayag out of pocket?
I'm debating whether I can became a part time online student in a cheap university not too far away from assayag https://shs.gmu.edu/insurance/ - > Then I would try to get on their school PPO healthcare plan, I was going to a class somewhere anyway
They have a Aetna ACA compliant PPO
But how do we find out the codes / numbers to verify with Dr. Assayag and insurance that nail removal would be covered? What kind of code or number would we need to give to the insurance to verify beforehand?
I am trying to avoid going to India because I'm afraid of the covid variants but before I was thinking Parihar for nail removal, not sure how much that costs
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Yeah hm... What will you use for nail removal? Pay Assayag out of pocket?
I'm debating whether I can became a part time online student in a cheap university not too far away from assayag https://shs.gmu.edu/insurance/ - > Then I would try to get on their school PPO healthcare plan, I was going to a class somewhere anyway
They have a Aetna ACA compliant PPO
But how do we find out the codes / numbers to verify with Dr. Assayag and insurance that nail removal would be covered? What kind of code or number would we need to give to the insurance to verify beforehand?
I am trying to avoid going to India because I'm afraid of the covid variants but before I was thinking Parihar for nail removal, not sure how much that costs
He's in-network in my insurance, I have Aetna. I should still doublecheck whether removal will be covered though, I have to do that. You can email him or another American surgeon and ask him what CPT and/or ICD codes he has to bill nail removal under
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Week 3!
walking, getting up from a chair, wall sits: https://imgur.com/a/CRRMqW5
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!! Looking great!
When does Assayag recommend doing nail removal and how long does it usually take to recover?
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I think it’s when he judges your bone to be healed enough, which is typically around a year. and from what i’ve read/seen on interviews and diaries, it takes around 6 weeks (give or take) to recover from it.
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Your journal is very helpful. Thank you for the spreadsheets and giving back to the community in such a big way.
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Your journal is very helpful. Thank you for the spreadsheets and giving back to the community in such a big way.
of course! so glad it's helpful. even though this forum can be a little wild at times, i'm so glad it exists because i've learned so much from it.
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How's your recovery so far, ab608? Are you able to go up and down stairs? Has the numbness in your shins gone away at all?
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congratulations! you're making awesome recovery!!
I remember us starting at roughly the same time. It's good to see you're doing well.
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congratulations! you're making awesome recovery!!
I remember us starting at roughly the same time. It's good to see you're doing well.
hey, thanks so much! same to you, glad you're done and your recovery was smooth!
re: stairs - i can go up pretty well, but coming down is tougher. landing on my quad and then progressing down to the next step with the other leg, all in a controlled way is tough, i basically kind of crash down lol. need to keep doing more lunges, squats, etc to continue building quad/glute strength.
shins - i actually felt that numbness during lengthening, but somewhere towards the end of the process it disappeared. i can feel my shins fine now. but i do feel random nerve sensations all over still, with the majority being in my feet and shins. the worst it can get are what feel like electric zaps or shocks which last for 3-5 mins, but its not bad and goes away quickly.
otherwise, recovery is going pretty well, but it definitely has its ups and downs. these past 2 weeks i've been slacking so much on PT/training because work has been crazy. so during the weekdays, my gait is absolutely terrible and my stiffness is at its peak because i'm sitting for most of the day. and then to compensate for that, i stretch and work out really hard on the weekends, which helps a lot in making me feel less stiff, but then also causes a lot of pain haha. like all things, it's all about prioritizing and balancing. and in general, you have to accept that your walk is going to look different throughout the day, because the stiffness is always coming and going. but on the whole, things are definitely looking up.
i also had a followup with Dr A today which was great! giving a shoutout once again to him and his team for everything so far -- responsiveness, attention to detail, everything-- i'm so grateful to them; they're absolute legends. bone growth is looking great, i think one of my legs is completely healed and the other one is almost there. i still can't do any jumping or running/jogging, at least for the next 3 months/until the next follow up. the priorities are to keep strengthening and to continue stretching my IT bands, because they're messing with my gait.
i have to say that i'm feeling so much better and optimistic now that i can walk. getting the independence back is literally priceless. and tbh i'm really enjoying the process of learning how to walk again. i feel like i'm at a stage in my life where most of my big goals are vague and take such a long time to attain, so i love having such a concrete, straightforward goal like learning how to walk again to work on everyday. it's such a breath of fresh air! random but thought i'd share.
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Had my x-rays yesterday and somehow i'm miraculously 100% weightbearing now?!
x-rays: https://imgur.com/a/fvOx1Z6
Hey ab608! Your journey is amazing, and I wish you well in your recovery. It seems to me like there's a mild bend in the nail in your left leg. This is visible in the side view x-ray. Is this really the case, or is the photograph making it look that way? Either way, you are doing great. Keep up the progress!
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Hey ab608! Your journey is amazing, and I wish you well in your recovery. It seems to me like there's a mild bend in the nail in your left leg. This is visible in the side view x-ray. Is this really the case, or is the photograph making it look that way? Either way, you are doing great. Keep up the progress!
thank you! hm yeah, i sort of see what you're saying. that x-ray was taken mid august and i've had another x-ray since then, and Dr Assayag didn't mention anything about a bend. i'm guessing the nails have a little bit of flexibility, and since the majority of my weight was being taken by my bones at that point, that much of a bend may not have been problematic. i'm not totally sure though; i can try to ask Dr A next time we speak
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I just noticed your newer x rays and there doesn't seem to be any nail bending. How has your progress been so far? How is your walking gait/leg strength?
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hey ab608,
I want to ask you - what is the written on your official surgery papers for this procedure? LL or bilateral LL or cosmetic LL? Or something else like osteopathy or bone surgery?
it's better if the papers hide the fact that it was LL so I was asking...
thank you
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I just noticed your newer x rays and there doesn't seem to be any nail bending. How has your progress been so far? How is your walking gait/leg strength?
i hope there's no bend! i didn't take pictures of my sept x-rays but yeah, i don't remember there being any noticeable bend + i think i had 4 cortices bone growth at that point, so i think my bones were and are taking a majority of my weight.
my gait looks pretty decent now, i'll try to take videos soon, but i still feel quite a bit of tightness around the side of my left thigh. definitely still dealing with tight IT band there which affects my gait - it makes my left leg swing out a bit instead of going straight in front of me. my strength has improved, i can go up stairs unassisted, but when coming down i still have to hold onto the railing. i'm able to stand up from chairs without holding onto things, but it still takes effort. i'm also still working on balance alongside all of that
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hey ab608,
I want to ask you - what is the written on your official surgery papers for this procedure? LL or bilateral LL or cosmetic LL? Or something else like osteopathy or bone surgery?
it's better if the papers hide the fact that it was LL so I was asking...
thank you
not sure i get you - papers for what? do you mean for getting off from work? for that, i had to ask Dr A to send a letter/email directly to my company's HR. the letter was pretty vague - it just said i was getting surgery for an orthopedic condition on both legs and i needed 3 weeks to recover, and my HR was fine with that.
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Hey ab! How are things going for you?
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i'm doing really well! my walk looks like 98% normal now. i keep procrastinating on taking a video but i will post it soon. i think it started to look really normal beginning/mid november, which was ~3 months after being cleared to weightbear. i'm also getting x-rays on monday so i'll try to post those. hopefully i'll be cleared to run and jump (although it'll probably take some time for me to actually begin doing that normally). strength-wise, i can do all of my normal daily activities perfectly normally, but i still struggle with lunges and squats. squats feel so awkward now because of the added length, but they're getting a lot deeper/my quads are getting stronger.
my hips get irritated very quickly though. i've had 2 episodes of bad hip pain, one of which i'm going through right now. the first time around, i'm not sure i did anything to trigger it, but this time i think i brought it on by being a bit more aggressive than i should've at the gym. also, i mentioned this a few months ago, but my right leg still appears slightly shorter than the left. we've confirmed there isn't a bone length discrepancy, so the cause is definitely muscular. if i stretch my right leg really aggressively, it'll become the same length as the left, but otherwise, it'll be a bit shorter. my PT thinks that the muscles around the right hip are really tight and basically pulling the leg up - i wonder if that's what's happening. it's not a noticeable difference and doesn't affect my gait, but i do worry that having that difference puts stress on my left hip and causes it to flare up painfully more often, and just causes my pelvis to be off/out of alignment (this is also according to my PT - she always has me "reset" my hips whenever i see her. i'm not sure if that actually helps, but i hope it does). i think eventually it'll stretch out, i'll just need to keep stretching. my uneducated theory is that my hip muscles are still really tight and guarded because of the surgery and that it'll take a while for them to loosen up.
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Thanks for the update. Looking forward to seeing the video.
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Hi! Thanks for the update!! :) Hope you are doing well!
I have question regarding pre surgery, did you in anyway tried to get "ready" for surgery? Eating healthier, working out, taking supplements - etc? :)
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Hi! Thanks for the update!! :) Hope you are doing well!
I have question regarding pre surgery, did you in anyway tried to get "ready" for surgery? Eating healthier, working out, taking supplements - etc? :)
hi! i did stretch hamstrings/quads/hip flexors quite a bit before surgery, but it was all in the month before, so i'm not sure how effective it was. i think i got lucky in terms of flexibility because i've always been naturally flexible, so i didn't have *so* much trouble with tightness during lengthening (i definitely did at times with quads + hip flexors, but overall i didn't run into any huge issues). but if i were to do this again, i would def stretch a lot more well in advance of the procedure. i think that'll just set you up for success during lengthening + get you used to the discipline that you'll need for stretching both during lengthening and after. i think you could also start taking vitamin D and calcium supplements before surgery too, but i would confirm that with your surgeon before starting that. in terms of working out, i hear/read on the forums that bulking up muscle mass may make you tighter, so maybe stay away from that? i don't know, the jury might be out still on that. but definitely work out upper body if you're doing precice!
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Hey, ab608，it's nice to see you recover well! This is a great progress
I would like to ask you, what tests did you undergo before operation? For example, check some hidden diseases. Recently, I'm worried about whether there are some hidden diseases that will make me unable to perform surgery.
Thank you for your answer!
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great progress, how many months are you post OP now? are you able to run/jump/treadmill jog?
how long did you stay in Baltimore? im planning for 5 months post OP, and how long until you stopped PT by Sinai? thanks!
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It has been a while since the last post. Are you back 100%? Anything you would do differently? Also did Aetna cover the surgery or just the nail removal.