Hello Ed, I had to have a supra pubic installed in 2012 after having used an external catheter for years. Right after the installation, as soon as the anesthesia wore off, dysreflexia kicked in and was pretty consistent for a couple of weeks. I ended up going back to the urologist who performed the installation, but he had no answers. Dealt with it for about six months before somebody on the care/cure message board recommended a duette catheter. Been using the duette ever since and it's been mostly okay. Still have a little bit of dysreflexia when getting in and out of my chair, I think it's the movement from the tube. Changing the catheter once a month triggers dyslexia, it lingers for about 30 minutes or so. The dysreflexia isn't bad enough to give me a headache, just the feeling of goosebumps and a bit of sweat. I don't know why my body was so sensitive to it, there are people on the care/care message board that haven't had any problems whatsoever. UTI test always comes back positive, the urologist says it always will, and is against antibiotics. I've never had any symptoms of infection since having it installed.
I did ask the urologist about Botox injections, but at the time he said they weren't available anywhere in the area. He gave me the option of implanting something to keep the sphincter open, but he advised against it for some reason. Noel C-5, 30 years last February On Wed, Nov 20, 2024 at 5:46 PM Edward Tessier <[email protected]> wrote: > > Hi team, > > I've used an external condom and leg bag for 40 years. My attendant taps and > pushes on my bladder to get it to empty. However, the sphincters at the base > of my bladder are no longer opening properly, triggering a lot of > dysreflexia. My urologist now wants to put in a Supra pubic catheter. > > Has anybody else been using this system? What have been the pros and cons for > you? > > I cannot use a Foley catheter regularly. I've had so much damage from kidney > stones over the years it triggers some really horrible urethral burning. > > The doctor mentioned treating those sphincters with Botox injections, but > does not have experience janelle if this is a good option for populations > like ours. As anybody else looked into or tried this option? > > Thanks guys for any advice you can give me > > Ed Tessier > C5 - 6, 40 years post injury
