@snow
Thanks for sharing your cousin's experience with Interstimm. It obviously can be effective on spinal disc issues, but that your urologist told you it doesn't work on bladder problems,though the comment sounds like it was directed to you.
This is my first response to your posts. You can't respond to every single person(well, some here do). I just feel disheartened that I post to someone who needs some support, and a number of them respond to others, but not to me, which I don't understand.
To your condition, it's a little different - "neurogenic bladder / cauda equina syndrome since I had a catastrophic snowboarding injury at age 35". Wow, that's something I'll have to look up. I need to keep in mind that this is an incontinence site, and though a majority of members have it from prostate operations.
I had a ThuLEP (similar to HoLEP) which is a laser that is capable of removing almost all of the prostate through the urethra. I had a benign but very large prostate (146 cc). It has been 4-1/2 months, with doing Kegels every day, being told my bladder was used to having that huge prostate under it, and that I should expect some time for no leakage.
It improved for a short time, about a month after surgery, but that was short-lived, and it went back to the same thing I'm just sick of it. And I can't see the surgeon because of COVID. I'm supposed to have a phone conversation with him on Tuesday. I know what he'll say from our last conversation. "Just be patient. It takes longer with some than others. Keep doing the Kegels. Once the ban is lifted, I'll have you come in, do a urine void, then ultrasound over your bladder to see if there is any remaning urine (I'm almost positive there is not.), and then take it from there."
I'm so glad I didn't have prostate cancer, thanks to God. But this is so depressing and dehabilitating. If I just reach to my side with either arm, just to pick up some of my scattered paperwork, some urine squirts out. If I walk around the house, maybe wash a few dishes, or get something from a cabinet or the refrig. - same thing. Even just laying down, either watching TV, or during sleep, every 1-1/2 to 2 hours, the napkins I place on top of my diaper (which I also place a stick-on thick pad on), the paper towel is soaked. I use the paper towels because they suck up the urine, and I usually don't have to change the diaper for 2, sometimes 3 days.
We all have our sufferings.
www.nafc.org
. And I am not just game for anything. Granted typing this I feel sort of a hypocrite in that I am on a newly found drug to prevent ms relapses ‘Tecfidera’ however I have not had a relapse since dec 2016. Granted I don’t really get any of the side effects from that drug so who knows. The joys of life lol.