My 37 year old husband had a massive brain hemorrhage on August 4th. We did not know he had an AVM. He has been recovering nicely (albeit slower than anyone would like!). One of the major medical issues that remains (other than the AVM itself) is that he is having trouble peeing (voiding). He was on Flo Max for two months (and continues to take that medication), and just last week started Urocoline. He is now peeing intermittently/sporadically. He is taking 25 mg three times per day. We are thinking about increasing the dosage. Has anyone with a brain hemorrhage dealt with this issue? Taken Urcoline? Had success? Issues? How about other non-traditional treatments such as hypnosis? Acupuncture? Reflexology? Anything else? Thank you so much for your help.
Dear Mrs. Berman,
First of all, I'm so sorry for you and your husband; that must have been a terrible experience. I'm glad he is recovering though!
I also suffer from a neurogenic bladder, due to an AVM in my spinal chord (not in the brain, but very close to it) that took place nine years ago, when I was 14. I took Oxybutynin (both in pill and liquid forms) for years, but it never really provided me with the desired results and/or comfort. I also suffered from some side effects (dizziness). Some four years ago, I tried botox (Botulinum toxin) for the first time, which changed my life. Comparable to its function when used to diminish facial wrinkles, botox relaxes (paralyzes, in essence, although the word is slightly frightening) muscles. The bladder is also a muscle, and can be relaxed in this way as well. The procedure is minor and can be done (at least in the Netherlands) under general or local anesthetic. A needle/syringe is used to spritz the botox in between the bladder muscle tissue in several (±20) different spots. The results include a calm bladder and last for 6-9 months, depending on the person.
An important consequence of this, though, is that voiding is no longer possible without the use of a catheter. I was used to this already, however, for my neurogenic bladder prevented me from ever completely voiding on my own in the first place. I use SpeediCath compact catheters, which are very convenient and discreet. I am female though, so for men they will need to be a little more obvious I guess :-). I don't know whether your husband also has experience with this. I am sure you know the risk of bladder infection increases drastically when voiding doesn't take place regularly - if not always when urinating, so this could be something to consider anyway.
I really hope I could help. If you have any question whatsoever, please don't hesitate to contact me via a personal message.
P.S. For more information, check: http://www.bladderandbowelfoundation.org/bladder/bladder-problems/botulinum-toxin.asp
P.P.S. I also tried acupuncture, but that didn't do the trick for me.
I don't know what to suggest about the peeing issue.... sorry.
I read some of your other comments. It is very important for you husband's arm/hand recovery to do as much physical therapy as possible. Typically, insurance will stop paying once a patient plateaus. That happened to my wife with her right leg atrophy. We found an EXCELLENT personal trainer who had a great understanding of the body's muscles. We gave her access to Chari's PT records, which documented which of her muscles were working, and which ones weren't due to nerve damage. Our trainer worked with Chari over a year, building workout regimes that strengthened the muscles that worked. The result is she is walking MUCH BETTER now.
I had heard that the most progress on muscle recovery is made during the first six months, so there might be some urgency.