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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!
Author
Topic: Precice 2.2 Diary - Baltimore w/ Dr Assayag (April 2021) (Read 12559 times)