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[mloosemore]

Greetings from England. I have just discovered this forum and hope you guys on the other side of the pond don't mind a question from the UK.

My son who is 32 years old suffers from Freidreichs Ataxia which has over the last few years progressed to a stage where he is now suffering from severe leg spasms. These are causing him to slide out of his wheelchair and fall out of bed at night.

He lives alone in a specialised disability bungalow with carers who come in to get him up in the morning and put him to bed at night.

Five weeks ago he was taken into hospital for assessment to determine what medication he could be given to ease the painful spasms. He has been on painkillers and 4 x 40mg Baklofen for over a year and the latter does not seem to be helping much any more. The consultant has said that there are three possible treatments that they can consider.

1 Botulinus Toxin injections
2 A spinal pump treatment with Baklofen
3 An uncommon but possible surgical solution involving 'disconnecting' the nerves to the legs which would result in his legs being 'floppy' but manageable. Tim has for a very long time said that he would prefer to have his legs amputated as they are absolutely no use any more and in fact cause him a lot of difficulty in movement and serious pain.

His carers have said that they are unable to help him until something is done to reduce the spasms

I see from various threads that a lot of you are familiar with the Baklofen pump option. I wondered whether anyone has come across the third option before. We have a bit of a problem in that the consultant who mentioned it has been chastised by the one who is now looking after my son for mentioning this as she prefers a drugs only solution

Does anyone have any thoughts for or against any of these three options?

[babyblues]

Welcome to our community; here you will find much advice, support, and even laughter and camaraderie--good for you, your son, your whle family.

While I am not SCI, I am a carer and GF and friend, and given the choice myself, or asked by my BF or friend--or if I was in your son's place--I personally would not consider option 3 until I had tried option 1 or 2. Option 1 or 2 can be reversed if they do not help (and they very well might; I've heard of the "botox" treatment and although every case is different, the results vary, and the length of relief varies, many people who've had it done for that very reason have had some kind of success, and some of our members--I expect you'll hear from them in short order--have the baclofen pumps, again with varying degrees of success and relief).

However severing one's nerves or amputating one's legs is a drastic measure and cannot be reversed, and who knows what medical advances will come that might be of benefit in the future?

If you use the "search" feature at the top of the main forum page and put in either tag, "baclofen pump" or "botox" you should pull up numerous threads that provide a great deal more information than you could imagine--the good, the bad, the in-between, which will help with making an informed decision.

As a side note, as you will discover as you peruse the site, it is based in the UK, but our community is worldwide, with no boundaries although quite protected, and there are a number of members of all kinds quite nearby you who may have much more information and advice to offer since things are quite a bit different here in the states.

Good luck, and keep us posted--we wish you and your son all the best and you will be in our prayers and thoughts daily.