Hello. I apologize for the length of this post but I have been suffering through a crippling ordeal that has left me suicidal and without any hope. I am a 33 y/o male. When I was 21 I sustained an L5-S1 disc herniation by jumping from the top of a bunk bed and landing on one foot vs. both. (I did not fall). I had debilitating back pain and sciatica and the doctors refused to even order an MRI because they said I was too young to have a herniated disk. Eventually an MRI showed an mild to moderate L5-S1 disc herniation with moderate spinal stenosis compression of the exiting S1 nerve root and no narrowing of the neural foramina. Around the same time I hurt my back I developed a strange strong urge to urinate all the time that was unbearable. No incontinence, but I went to multiple urologists and neurologists who dismissed me as a hypochondriac and tried to put me on all sorts of drugs. The neurologists said that it was impossible for my back to have caused this symptom. Over the next 12 years I continued to have bladder issues that progressively worsened.
I started to lose sensation in the bladder and eventually had just pain. The thing is everytime my bladder got worse it corresponded to worsening of my back as evidenced by the MRI. But the neurologists were dismissive saying there is no Cauda equina compression so it was impossible for my back to be causing this. In Jan. 2014 my back pain became worse and I developed complete ED and more bladder deficits including weak stream. Went to the ER in Boston and the MRI now showed Neural Forminal Narrowing and impingment of the the thecal sac now affecting both exiting nerve roots. The doctors dismissed me even though I begged them for surgery and was absolutely sure this is what was causing my problems. In May 2014 I had microdiscectomy for the back pain (the doctor cautioned me that it would not relieve the sexual and bladder problems because he did not see any evidence of that on the MRI) and since then I've still had the same problems.
Finally, I begged a Urolgist post surgery to do a comprehensive Urodynamics test and that showed a Neurogenic bladder. I was basically urinating using abdominal muscles and not the bladder. I was livid because I had begged the doctors for years to do this test and they ignored me telling me bladder issues and now sexual issues were psychological. I went back to the Neuro armed with this information and he dismissed the urologist saying "Yes, you have a neurogenic bladder but there is no way your back could have caused it." They then did multiple MRI's of brain/thoracic/cervical spine looking for MS and other demyelinating diseases but all normal. Also, I had a completely normal neuro exam, and normal muscle strength, so even the doctor was skeptical about me having MS for 10 years (the beginning of bladder troubles) and not having more symptoms.
I apologize for the long post but I am livid because the doctors have crippled me and now I can't even sue them because I cannot conclusively prove that my neurogenic bladder was due to the l5-s1 herniation even though it's obvious from the timing. Has anyone else had a disc herniation cause "Cauda Equina like" symptoms without actually having compression of the Cauda Equina?
I suspect, after doing a lot of research that my S1 nerve root impinged the piriformis muscle which I in turn affected the pudendal nerves which I believe or lower (S2-S4) but I can't prove it. The doctors gave up on me and now basically want me to hunt for some phantom autonomic neuropathy specialist because they think in addition to the back issues, maybe some mysterious autoimmune neuropathy hit me although I believe this is complete garbage. The strongest link I have is that every exacerbation of back pain and progression of disc herniation caused as evidenced by an MRI correlated with a worsening of the sexual/bladder problems. Thanks again for the input and sorry for rambling so much.
Im currently experiencing bladder issues I see a pain management specialist he's also a spine specialist my injury occurred in 2015 a car went thru my driver wheel under my driver side seat out the back side knocking both wheels off at impact my initial MRI showed no disc bulge or anything at the time a year later I have another one and it shows a mild disc bulge at the L5 S1 also the doctor told me I couldn't be experiencing this pain I have had injections so many times I don't want any more not only do I have bladder issues I can't walk straight without pain I lose leg strength I have a few falls I could go on and on but I'm on lyrics now and without it I can't walk but the doc said he don't understand how so I joined this forum to let the member from a year ago know he is not alone it do make you feel crazy I can't sleep at night can't take walks and a host of other things your not crazy I'm gonna leave it there
No fibrosis and no spondylolisthesis on bending x-rays. I do have have lumbarization of at L5 which the doctors say is relatively common and unrelated but I'm not so sure. It is a sacral vertebra that takes the appearance of the lumbar vertebra but has failed to fuse.
I totally agree with you about education. I'm a very well versed patient and pro active but the doctors treat me more like a mental patient and I'm frequently told to take anti anxiety pills. Upon this I explode and tell them if you ass#^#^$ had listened to me when I said I had a neurogenic bladder 15 years ago (which was very very mild) and done something I wouldn't have progressed to where I am now. Why go to medical school when a 21 y/o engineer with no medical training correctly diagnosed himself when everyone else LABELS him a hypochondriac?
Hi Peaches. Regarding the anti-anxiety pills that the doctor would was so eager to give you, there is a good chance that he would have been able to to "pad his bottom line" for giving you that prescription.
My suggestion is olive leaf powder,...not the extract, though the extract is what you'll usually hear about. Good old olive leaf powder is anti-inflammatory for nerves. "Neurodegenerative diseases Olive leaf extract suppresses inflammation in the central nervous system and reduces damage caused by oxidative stress. This helps protect the nervous system from the effects of stroke, brain trauma and age-related degenerative conditions like Alzheimer’s and Parkinson’s disease." www.qbuzz.qnet.net/blog/2014/06/12/olive-leaf-extract-extracting-poor-health-lifes-worries/
Before my SCI, I always went to a chiropractor for bladder issues. But now, with SCI, I don't think that insurance would cover most chiropractors, so that ceases to be an option. They can't risk it with us.
Sorry to hear this I started my journey as an L5 S1 herniated disc with severe pain and some left leg weakness foot drop and the bladder urges. Needless to say I was in the Army at the time and they decided to fuse me and put a screw in the wrong place which made things way worse. Then found the mistake 2 months later and messed up again I am now a T3 para long story short. You can definitely have all the problems from the injury level you have and it not being treated properly the caudia equinea area is alot more delicate than they like to tell us.