My husband has SUFFERED tremendous horrific pain for the 9 of his 22 yrs as a quad. It's his bladder. He went from a condom cath after 14 yrs to an indwelling in 06 and then SP tube in 08. Since he left the hosp with the indwelling (result of emergency surgery to remove a kidney stone lodged in his right ureter where it meets the bladder) his has had extraordinary pain (like someone is holding a lighter to his bladder 24/7/365) since 06. Meds, a nerve block which made it permanently worse, and a slew of other things have never helped. He wishes for death to escape the pain. It's that bad. So...we fled Texas (which sucks for SCI if you have medicaid) and came to Colorado to meet with uro's who treat at Craig Hospital. The uro's in Dallas wanted to remove his bladder but said that would not eliminate the pain but lessen infection.
Here's the deal: on Tuesday he will have Botox injected in to his bladder wall and his bladder sphincter. They will clamp off the sp tube for two days and give him an indwelling cath for a cpl days and then try to see if he can condom cath again. We think the presence of the cath in his body itself causes the pain. He's VERY SCARED if this doesn't alleviate the pain there's nothing left to try. Has anyone else ever reversed an SP tube? Please excuse any typos or brevity of tone as this was typed using an iPhone (and possibly Siri, in an effort to be as safe as possible while en route.) G
