I am a 36 year old male that suffered a terrible car crash 18 years ago. I immediately developed urge incontinence, most likely for spinal shock and spinal bruising at L2. I've been on every conceivable medication for incontinence but none helped.
In an effort to make things better I underwent the interstim test implant two years ago. It was a complete failure and felt like electo-shock torture for the 3.5 weeks it was active. As a bad side effect, the interstim seems to have "fried" my sacral nerve. Undaunted, my urologist immediately tried bladder botox injections. It did eliminate my urges but also eliminated my ability to pee at all. I spent a full year catheterizing before the effects wore off enough.
However; I am still now unable to pee unless I strain and push on top of the now often painful urges I get. This has caused three separate and reoccurring hemmorohids which I have had to get surgically removed at great pain.
The last three urologists I've seen either do not know how to help me or offered to create a stoma from my appendix and/or even resection a portion of my lower intestines to create a second bladder- either option of which I would need to catheterize. I believe these are more radical options than a sphincterotomy and would prefer this surgery any ways, especially given that I have already been having to wear diapers for the last 18 years.
At this point I am simply looking to improve my quality of life, completely eliminate my urges, and hopefully let me sleep through the night for once.
My current urologist (Dr.Young at the mayo clinic in Jacksonville, Fl) began letting me believe he was going to help me, but is now waffling and uncertain. He will be doing yet another study on me in a few weeks even though I already have a recent one on file. I know these studies are often inconclusive, require a lot of interpretation, and do not show how I feel. Still, I can send them to you if you'd like.
Do you believe a sphincterotomy would be a valid treatment option for me? Also, would you be willing to do it? Obviously I would have to travel quite a ways to come see you so additional testing and consulting would have to be done via the phone or email though.
Your situation is complex. You failed interstim which is one of the more effective options for complicated cases. Your botox therapy appeared to be too effective resulting in the need for catheterizations, but it also suggests that your bladder will respond to it. Tibial nerve stimulation has not been tried.
The fact that some of the urologists have suggested such radical surgery options suggests the seriousness of your situation.
Spinal shock is a condition that occurs after a significant spinal injury but usually lasts only a few months.
You have not indicated what the findings of these studies are. A sphincterotomy is usually necessary when we have untreatable high pressures in the bladder that cause damage eventually to the kidneys. The need for these has diminished as we have better meds and procedures to control bladder spasms and contractions.
Your situation should be reviewed by someone with special expertise in complicated pelvic floor and bladder control issues, such as a urologist with fellowship training in this area. My special expertise is in kidney stone disease, but one of my colleagues here in Omaha, Dr. Michael Feloney, has such expertise and if you came here I would refer you to him. You can also find a listing of fellowship training locations at: http://www.urologymatch.com/node/66
Dr. Ghoniem at the Cleveland Clinic Florida is the director of their bladder program. You may want to ask him for an opinion.
Finally, a sphincterotomy with or without an artificial sphincter may be a reasonable option, especially if you are already using pads. However, ideally we would like to find a way to avoid permanent incontinence for such a young man. Good luck.