I was diagnosed with FA at 11 and have been in a wheelchair full-time for 10 years. My feet turn inwards and I can no longer get my heel flat on the ground, my Achilles tendon has shortened. I have been offered surgery to lengthen the tendon and free up another muscle to re-position both my feet.
The end results are very attractive here but I need to think about the recovery after surgery, My feet would be in plaster for 6 weeks. So looking to get in contact with someone who has had it done. My chief concerns are:
1. Pain - something I have to accept but would be good to know what to expect
2. Mobility in Plaster Casts - I live alone so want to understand how likely I can cope on my own. Probably, need my dad to stay and help out. An important question for me to investigate is 'how much weight can I put through my legs?'.
3. Leg Spasms - despite being on hefty dose of baclofen, my legs still spasm especially in the mornings after sleep. Concerned about spasms post op (pre-plaster) and once in plaster.
4. Weakening Tendons - know lengthening tendons makes them weak, so interested to know 'how much will they be weakened?'.
Would like to connect with someone to talk through these concerns, reluctant to use an Internet search here as you can find 1001 differing views.
I know how painful leg spasm are because I had nocturnal muscles cramps in the leg also. I solved this problem with 1000 mg calcium 500 mg magnesium 1/2 dosage morning and night. Calcium is a contractant for our muscles and magnesium is a relaxant for muscles. You donot need baclofen for leg cramps. I increased my magnesium dosage to 1000 mg after my body got use to magnesium 1/2 dosage morning and night I also take vitamin D3 5000 iu..
I take calcium along with magnesium because I donot want my body taking calcium from bones causing osteoporosis.
magnesium will prevent calcium build up in soft tissue and joints.
I have had SCA for a very long time and use a rollater, sometimes a scooter. hope what I say will help a little. Firstly you would not have been offered this surgery if it was a no-no
I am recovering at home from a total knee replacement which was painful. I have slipped off things twice (bed and chair) but not actually fallen so far. Mnd you I am very lucky to have a martinet of a hsband,which doesn't help you as you live alone.
I really don't think the hospital will allow you home until they are happy with you and your ability to fend for yourself.
I'm so sorry you have to have this surgery but it may be short term pain for long term gain if you know what I mean? My daughter has had SCA since a baby and was lucky enough to have splints on her legs which has put off her need for surgery on her feet/legs and despite the pes cavus deformity of her toes she has reasonably straight legs. They have said that surgery will be necessary at some stage but for now she's ok but if and when she needs it I think she would choose to go through it if there's anyway that it may increase her chance of walking.
It is a huge decision for you and yes you would probably need some help at home for some time. I don't know if you'd be able to get any home help?
Have you heard of direct payments? It's a scheme where you can employ a personal assistant to help you with whatever you need. If you have a social worker they will know about it or if not you need to ask for a social services referral.
I hope that this has been helpful in some way.
I wish you lots of luck for the operation if you go ahead with it.
Are you sure you are having a plaster? I had foot surgery and they used a boot that you could "walk" in
Has taken 12 months to regain better walking ability due to pain afterwards
Second or third opinions are always good
just come across this thread - before deciding on surgery it's worth considering orthotic insoles to help stabilise and align your gait and posture. Foot Factor in Great Portland St, London offer a free 30mins consultation, the practitioner has ataxia himself so understands the problems. It may help you and could prevent or postpone surgery so go and discuss it all with him. At the very least you can then go into surgery feeling confident that you've looked at other options and that an operation really is necessary.