Bladder surgery and Friedreich's Ataxia: Should I?

So let me introduce myself first. Good evening everybody! So let me introduce myself: I am a Friedreich’s Ataxia woman, living alone in an apartment in Zurich, Switzerland. With the help of several personal assistants and thanks to a certain talent to organise things and invent tools, this is still possible. I am alone for several hours a day and also through the night. I’ve been having the disease for 40 years or so… And it is sort of enough. Don’t let me discourage anybody! Quite on the contrary! Go for it! Live a phantastic life! I had one, full of love and happy and difficult years. Between 2002 and 2006 I was the editor of the newsletter of Euro-Ataxia,but after this period I withdrew from any social activity and helped to establish a project for people in similar situations. This was new in Switzerland. It is now inherent part of legislation.

Since three or so years, there is no end to broken wheelchairs, broken spines, shoulders, eyes or bladders… I’ve always thought of life as being more than just managing the material body. A friend sent me to HealthUnlocked to ask: Can anyone here tell me if he or she had botox injection to manage incontinence of the bladder? Would he or she share his or her experience with me ? An operation with botox is something quite unusual and even mor special for someone with FA , wich is why I am writing to you ( Eengland,Switzerland). Thanks a lot in advance!

[wobblybee]

Hi Foreign_Lela, welcome 🙂 There was a discussion a good while ago, and someone mentioned they'd had TVT surgery for bladder incontinence. Look above for the box SEARCH ATAXIA UK, and type in TVT Surgery.

On a Facebook Ataxia Support Group, someone recently had Botox to hopefully alleviate this problem. In many cases Botox can be helpful but this particular person was disappointed with the result.

You can find information online by searching for TVT Sling and TOT Sling. Opinions vary regarding this type of procedure, so obviously it would certainly be advisable to discuss this in depth with your doctor and/or Neurologist. I hope you find something that helps 🙂xBeryl

[Hidden in reply to wobblybee]

Thanks, wobblybee! I sure will... Oh, but I don't like Facebook...

[wobblybee in reply to Hidden]

😏 I'm only active on Ataxia Support Groups, my profile is set to private, there's no way I would consider being 'mainstream' 😂 xB

[february]

I have Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7) and several years ago I had botox injections (twice) for bladder incontinence. The results for me only lasted about a week each time. I eventually had TVT surgery using a piece of mesh about the size of a bandage and am 90% better.That's my experience. Hope this helps! My best to you..., ;o)

[Hidden in reply to february]

Well thank you so much, february! It sure helps! I will send your eply to my doctor, see what his opinion is! How many injections was it? It will be 20, he told me. How many years ago did you try Botox? - I have not heard before of TVT. Is this a surgery you only do once? - Hope it is okay, asking you... My best Swiss wishes!

[february]

I just had two Botox injections about five years ago. Yes, the TVT surgery was done only once about five years ago also. Look up 'TVT surgery for urinary inccontinence' online if desired. I certainly don't mind answering questions if it helps! My best to you..., ;o)

[medea]

Hi - pleased to meet you. If you do resort to Facebook, there's a group called "FA'ers Only" - I know that several of the members have benefitted from this.

[Hidden]

Thank you, medea! I will try to find this group... Won't be too easy, as I am such a Facebook not-at-all-lover...