Interesting how differently nerve damage can affect us. My Neurogenic Bladder can’t tighten enough, so that’s why I leak and experience all the OAB symptoms. And the nerve that tells the brain to slow down production of urine and to retain it while lying horizontal in bed, is totally severed from my spine, so that’s why I have severe Nocturia. But I have no problem getting all the urine out of my bladder when I try. I’ve never had to self-cath nor have I had to have an indwelling cath. . . yet. I don’t get very many UTIs - maybe only one or two a year - given that I wear diapers and have these problems. Botox works for me by tightening my bladder muscles so they don’t leak.
But others with Neurogenic Bladder can’t feel nor release their bladder, whereas mine hurts. Other can’t quite empty their bladder, while I have no problem doing so. The bottom line is that nerve damage is complex, irreparable, and barely understood by the medical community as of this time.
There are so many problems like chronic pain caused by osteoarthritis and lower back injury that lead to permanent disability and conditions like Neurogenic Bladder caused by nerve damage, that there’s next to no research being done about because everybody is so obsessed with cancer research and living the longest life possible. What about quality of life? I’d rather be pain-free and only live to be 60 than to live to be 80 in my current excruciating, neverending pain. It’s time for for medicine to shift its research focus away from nothing but duration of life and to focus more on quality of life.
Initially I “just” had nerve damage and disc herniations, incurred in major snowboarding injuries in 2009 (the scorpion fall) and 2015 (the cliff fall). But now I have no remaining disc material in the cervical, lumbar, and upper sacral areas of my spine, so my spine now has a scoliosis curve of 17° to the left, and is rotten with Spinal Stenosis. Spinal Stenosis is an abnormal narrowing of the spinal canal and associated neurons that results in pressure on the spinal cord or nerve roots. It leads to pain, numbness, or weakness in the arms and legs as well as sexual dysfunction. This is expected to worsen as I age and to likely make my bladder problems worse and possibly also cause fecal incontinence. For the past 1.5 years my hands have been abnormally cramping up out of the middle of nowhere, like when driving or kayaking when I really needed my hands to do what I say, and I think it’s related to the damage in my cervical (neck) spine. That’s on my long list of things I need to have checked out by a doctor.
I’m emotionally as prepared as I can be in advance that if I live to be whatever age, my spine is going to make me need NorthShore MegaMax instead of my current Depend “Night Defense,” and 24/7. Right now, as long as I have Botox, I only need a Depend at night or on a very long drive in traffic, at a concert, or on a long flight.
Back surgery only worsens and increases bladder and bowel dysfunction, so it’s not something I’ll ever agree to. It never works for anyone longterm, anyway. Multiple back surgeries completely destroyed my aunt’s life and led to her early death, so I will not go down that same path unless there has been significant innovation in that field of surgery. I doubt that will happen because we have such an abnormal spine for mammal. We’re the only thing that walks upright and our spines are a HUGE mistake in evolution.
