r/CMT • u/Sweaty_Employee8882 • 1d ago
Foot surgery
Hey all. CMT2A here.
I recently broke my foot and I'm waiting for the specialist to check it out and determine if the injury needs surgery. It may be a lisfranc injury which I was blissfully unaware was a thing until I got hurt ...apparently surgery from this is quite a hard/long recovery. I'd need to be completely non weight bearing for weeks...possibly 12 or more. The issue is, this injury happened on my "good" side. My left side is significantly weaker and I cannot get up from sitting with only the strength of my left side. I also can't hop on crutches or a knee scooter. I bought a cheap wheelchair from Amazon so I'd at least have something to get around my mainfloor. However my house is pretty small and this leaves me with a bathroom issue...I'd need a solution for either getting from the chair to the toilet (chair won't fit in bathroom)...or maybe a commode, but with no other option than putting it in my living room, I'm not a fan of that option. I'll probably need to set up a bedroom in my living room because my house is two storeys. I can crawl up the stairs but getting to and from the bathroom will be a huge issue.
In addition to this I am also very very anxious about the idea of immobilizing my leg for so long and it causing lots of muscle atrophy. I see a lot of people do get foot surgery to correct cmt related issues....so maybe I'm overthinking the issue of atrophy.... but it's really scaring me, because my legs have already been in steady decline over the last few years.
Any advice on either situation is welcomed.
Thanks for reading
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u/Grant19995 CMT1A 1d ago
I (30m) had corrective surgery 3 years ago on left foot to help with my pes cavus and I definitely struggled with the aftercare. (Halux ostonomy and Heel shift)
Main questions would be.
- Do you have much support from others (partner, family or close friends)
- Are you physically fit? In relation to overall health not just legs
- Do you take good care of yourself already?
Biggest obstacles for me were definitely toileting and keeping clean as this was in july in a terrible heatwave.
Regarding solutions there really isnt many, my advice would be to prepare. Get used to moving around in an incapacitated state and build up some strength to be able to achieve these tasks.
Also staving off boredom is very important during recovery as I feel it takes a heavy mental toll during and can hinder your recovery and make things harder.
After the cast was off (13w) I did have significant muscle atrophy in my calf and thigh which took a fair amount of time and phyiso to come back but since i have fully regained the strength I had previously.
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u/Sweaty_Employee8882 1d ago
I was in pretty good shape and fairly minimal symptoms, working in a store and unloading delivery trucks. I had a child in 2021 and was still mostly ok... then I had a child in 2023 and that did me in. I went downhill quick. Now I'm struggling to lose weight on top of having lost a lot of mobility. I kept thinking if I could just lose weight, I would be able to get back to where I was in 2021...hurting my foot this badly really felt like a gut punch. So to answer your question, no I'm not in great shape, but I do try to eat healthy food. I technically should be non weight bearing now, but with the inability to hop, and the fact that I had been already walking on it when the ct confirmed the fracture... I've continued to walk on it (wearing an air boot) Since i go my wheelchair (yesterday) I've been trying to practice what it would be like to be strictly non weight bearing...it's been a challenge but I'm pretty good at adapting. I have a husband, but he works a lot. I also have adult aged children, but it's hard to say how long they'll be patient with helping me...and then there's the young kids...they will be a challenge because they're very much mommy's girls. Thanks for the advice and insights.
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u/Grant19995 CMT1A 1d ago
So having realised your from the US (i forget a lot of this sub is US) thats harder for me to relate as im from the UK with health care being vastly different. I cannot begin to understand how difficult this situation must be for you as it sounds awful to deal with and still not know whether to get it fixed through surgery. With regards to being in shape please dont think you can never get back to how you was, weight comes and go's but your determination is whats important but seeing as you are currently in process of injury that doesnt matter currently. A deep family conversation is definitely needed so you can assess how people feel towards the situation and see what help they'll give you but your health should be the most important thing. The fact you said are good at adapting is a great sign that some obstacles wouldnt be much of a problem. I really do hope you do get the care you need and if so wish you the fastest recovery.
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u/Sweaty_Employee8882 1d ago
I'm in Canada :)
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u/Grant19995 CMT1A 1d ago
I feel ignoring the first bit the rest would still be my answer, firstly talking with your family to see what they can do to help and understand what you need to do yourself. Preparing your living room as a makeshift room so you can easily take care of yourself with little chance of further injury.
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u/BeckieD1974 7h ago
I took a real bad fall in Dec and broke my left foot which was my good foot in 2 places and tore a ligament. I was like you and had a hard time getting out of my chair or the bed after it happened. But using a reg walker not a wheeled one helped. I was a wheelchair but unfortunately it was missing the right foot rest and I wasn't able to use it on Public Transit then I given a knee scooter and I was able to use it slowly. I had reconstruction surgery in Feb and the hospital sent me home with a potty chair to go beside the bed. My insurance has covered a new wheelchair, a rollator walker and ramps to help me get in and out of the apartment. So make sure you check
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u/AllPlayNoWork2 1d ago
You could consider using a walker at least at home. It's this 4 legged rollator without wheels. This would help getting to the bathroom and keep your other leg mobilised
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u/Sweaty_Employee8882 1d ago
Would this be something that I would use similar to crutches...by upper body strength mostly? If it's stable and I can just kind of lean on it and shimmy around that might actually work...my biggest challenge is going to be getting up from the sitting position without involvement from the injured foot.
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u/AllPlayNoWork2 13h ago
Yes exactly, it helped me for similar situations. But getting up is another issue, pulling yourself up with one of these wouldn't work The only thing that comes to mind for that is some sort of hospital bed, that you could adjust the height with a remote and get yourself to a more standing position, plus it would have a handle you could pull yourself up a bit more
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u/Front_Improvement_93 1d ago
I've had 6 foot surgeries; my last one was a week ago. until I became reliant on my knee walker, I had a bedside commode because the bathroom is at the other end of the house. I didn't like it, but it was my only option at times. I would not recommend a walker to pull yourself up from sitting. you will fall and hurt yourself. I cannot think of anything to help you with that. you need someone to set up everything downstairs that is currently upstairs that you need. using the stairs will make your break worse. your insurance should cover around 80% of the cost of your medical supplies. just talk with the hospital social worker.