Forum


donatenew

Welcome, Guest
Username: Password: Remember me

TOPIC: Late onset generalisation/bladder involvement?

Re: Late onset generalisation/bladder involvement? 2 years 10 months ago #3485

  • Anke
  • Anke's Avatar
  • OFFLINE
  • Gold Boarder
  • Posts: 81
  • Thank you received: 10
  • Karma: 1
Dear Joe,

So sorry to hear about your mother in law. Would be happy to let you have the contact details you were asking for, but I believe this site does not allow for names/hospital details to be passed on... Happy to do so if you can think of an alternative way, but I thought perhaps it may be sufficient if I passed on a translation (was treated in the Netherlands) of a brief report my urologist sent to my neurologist and to my GP. The Botox injections mentioned lasted about 7 months before they had to be repeated, and the urologist first had an urethra profiling test done, which showed muscle tonus there to be much too high. He decided to experimentally try the Botox (this was the first time for him treating a dystonia patient), but it made a huge difference!

Please feel free to show this to those treating your mother in law if you think it would help, and do let me know if there's anything else I can do.

PS - since I wrote these post I've had very successful DBS surgery which has also resolved my bladder problems, thus showing that dystonia was definitely the cause!

***
Specialism: urology

Dear colleague,

Your patient has been seen at our centre following very difficult micturition, which is thought to relate to her generalised dystonia. On 20-06-2012 I have injected 25E Botox in two places of the external sphincter.

When I saw the patient again on 24-07-2012 she was very pleased and micturition has improved 80%. The patient is happy with the current situation and feels the treatment has restored urinary function back to normal.

Yours sincerely, etc.
Last Edit: 2 years 10 months ago by Anke.
The administrator has disabled public write access.
The following user(s) said Thank You: Joe82

Re: Late onset generalisation/bladder involvement? 2 years 10 months ago #3486

  • Joe82
  • Joe82's Avatar
  • OFFLINE
  • Fresh Boarder
  • Posts: 2
  • Karma: 0
Thanks for the quick reply, Anke. I didn't realise you had been treated in the Netherlands and I understand this forum doesn't allow for this kind of info to be passed on.
The information you have provided is clearly understood and I hope it's enough to pass on to the urologist treating my mother in law. Fingers crossed it is a potential solution to her problem!

Thanks again.
The administrator has disabled public write access.

Re: Late onset generalisation/bladder involvement? 2 years 10 months ago #3502

  • Supergran
  • Supergran's Avatar
  • OFFLINE
  • Platinum Boarder
  • Posts: 261
  • Thank you received: 15
  • Karma: 4
Shakes may I ask do you have pain with the bowel problem? I have had 2 episodes of extreme spasm type pain which did not last long but it literally brought me to my knees and after it passed I had no problem with going to the toilet in fact I felt the need to be near a toilet. i stress this is not a stomach upset type situation but the pain is something I could not even describe. It is worrying as I feel if it were to go on for any length of time I actually would need an ambulance
The administrator has disabled public write access.

Late onset generalisation/bladder involvement? 1 year 10 months ago #3869

Uncertain about precisely what you're looking for, before getting any medication or herbs you should consult a doctor. For more information or even to educate yourself you can go through some great sites like PositiveMed etc ... also you can get a totally free ebook on bladder control here http://www.bladdercontrolmedicationadvice.com/
The administrator has disabled public write access.

Re: Late onset generalisation/bladder involvement? 1 year 7 months ago #3947

  • Lynn B
  • Lynn B's Avatar
  • OFFLINE
  • Fresh Boarder
  • Posts: 2
  • Karma: 0
Dear Alison,
Your daughter is not alone. I also have urine retention due to presumed dystonia, although the urologists don't like to use the word 'dystonia' as they don't always understand it as effecting the bladder, so just say its probably related to my walking problems instead, (which is dystonia).
I have learnt to self catheterise, and hope to never go back to an indwelling catheter, having been there twice. I wish your daughter all the best for the future.
The administrator has disabled public write access.
Time to create page: 0.125 seconds