L5-S1 herniation neurogenic bladder not Cauda Equina

phugoi1982, I am sorry to hear of your pain and suffering at the hands of incompitent quacks. From some of the posts I've read here and elsewhere it would seem these kinds of diagnostic failures are all too common in this field. One problem here in Canada is that you have to go through a GP for an initial diagnosis and if they get it wrong you don't know and that initial diagnosis follows you around like a shadow. My mother used to say regarding doctors: " They are all asses"

Thank you for the replies. It is very frustrating because I look completely normal and walk normally so people assume I am faking my conditions. In fact, a psychiatrist nearly had me committed because I stood up to him and told him he was a quack and all this psycho babble was BS and that I was legitimately physically ill. My family also thinks i'm a hypochondriac because I look fine despite the test results. So I am completely alone and dealing with a full time job and the stress of multiple medical issues. As for your question Lara, yes they did multiple rectal exams every time went to the ER in various cities in the US. My tone was completely normal and I never had diminished sensation or the so-called "saddle anesthesia". They specifically looked at the Cauda Equina every time and in the MRI reports and it simply stated "The Cauda Equina is unremarkable" even at the worst of my herniation in 2014 just before I had the L5-S1 microdiscectomy.

The problems is I saw multiple Neuros in different places including Chicago, where I was going to University at the time of my back problem, Puerto Rico, where my family was and I grew up and now in Boston where I live so I'm not even sure who is completely to blame. It is extremely frustrating because I live in Boston which is reputedly the academic hub of the world with the best hospitals and most extensive medical research programs in the world and yet I am unable to do anything or get into a research program for Spinal Cord Injury. The neuros have told me I do not have any evidence of cord compression or spinal cord injury even now (no weakness, normal deep Tendon reflexes, etc.) so now doctor will even consider taking me. At the end of the day all my MRI's and EMG's show is a bilateral S1 radiculopathy which the doctor's say is not a big deal. I have exhausted all my financial resources and mentally it has destroyed me.

Sorry for ranting again, it is frustrating having a debilitating diagnosis like Neurogenic bladder and complete ED and not at least having a true diagnosis for it like Cauda Equina, MS, Parkinson's etc. Like I said before, every other degenerative disease was ruled and I am sure my back is responsible for these but what kills me is that I have no way of proving it so I cannot sue the doctors or even have any sort of closure for why this has happened. As you probably know and understand, it is not financial compensation I seek for the sake of being greedy, but I want my quality of life back. Anyways, thank you again for understanding.

Hi. The urologist did not give me any meds because he I wasn't retaining any urine so he said I have a "clinically benign" neurogenic bladder that can only be managed with timed voiding to make sure my bladder doesn't over fill. It's funny because the Urologist wrote in my report that my neurogenic bladder was due to disc degeneration and that further insult to the back will cause progression of bladder habits. You would think this would be enough to go to court and sue the neuros but unfortunately all the neuros here disagree with that and of course lack of CES on MRI makes it hard to prove.

Hi DJ. Actually they are not giving me any meds. I actually was ranting about how I was put on multiple strong psychiatric drugs which I never took because they said I had a "fixation with imaginary diseases" but screw them. I remember telling the docs in 2004 I had a neurogenic bladder and they said it was impossible. I used those exact words. And voila. 10 years later the Urodynamics shows it. I also have complete sexual dysfunction which at 33 has destroyed me. In fact, to be even more blunt, because I was going through all these health problems in my 20's I never even had a girlfriend so now knowing I cannot even engage in normal behavior has left me totally devastated.

They have no explanation for the neurogenic bladder. However, I also have some autoimmune issues like thyroid disease and type 2 diabetes. But my t2 diabetes was diagnosed way after onset of bladder problems so it's unlikely to be culprit. It is also extremely well controlled on oral medication. The doctors basically gave up because their logic was "whatever damage has occurred and this kind of nerve damage Is irreversible so finding the cause is not important and we probably will never be able to find it." Like I said before, it was a very slow process. It took 10 years for the relative mild bladder sensations to turn into weak stream, lack of sensation, and sexual issues. I have read that usually cauda equna is pretty rapid presenting with saddle anesthesia, loss of rectal tone, diminished reflexes..etc. I had none of these. But like I have said several times, every deterioration of disk corresponded with an exacerbation of urogenital issues. Even the Urologist agrees with my but unfortunately in court Urologists aren't considered nerve experts. Basically, he can diagnose a neurogenic bladder but can't tell you what caused it. That is the job of the Neuros who have pretty much said live it with.

Basically, I am looking for an alternative theory on how the bladder/sexual nerves (S2-S4) can be affected by the S1 nerve root without compressing the Cauda Equina. If I can find that, I can sue these jerks who called me mentally ill and a hypochondriac for a decade.

I have seen about 10 different neuros and they all pretty much agree I don't have spinal cord injury and that there must be another cause to the ED/Neurogenic bladder. But they don't think they can find it. I keep getting told "Sex, isn't everything...and this is not the end of the world". Basically, because I am fully ambulatory and look fine and walk fine I am dismissed like "There are people with worse problems". I am also dealing with a severe vestibular disorder (basically have no balance function)  which is related to my autoimmune thyroid disease. This is why I suspected MS or something autoimmune but I was worked up for everything MS, RA, Lupus, and all negative so we're back to the obvious culprit which is the original disc herniation causing something.

Actually, one site doctor at my company suggested a really far out theory that may be possible. He suggested that when I sustained the original disc herniation, I may have had a small compression fracture, where a bit of the bone broke off and nicked the cauda equina/lower sacral roots but then the bone subsequently got reabsorbed. SO, unless they did an x-ray or high res CT extremely early on they would never have caught it. But, the problem he said is there is no way to prove it. Although, in my mind I feel that if I had sustained that injury early on and the bone got reabsorbed why would the nerves slowly deteriorate over 10 years? It would seem the nerve damage would happen a lot sooner. My symptoms were extremely mild for 9 years (just slight sensory changes in the bladder, but normal full stream, normal sexual function) and it was really only in the last 4 months leading to surgery where everything when to hell.

phugoi1982 that's very strange. Definitely seems like you've got a unique case that no one really knows about. What that Doctor suggest seems plausible but who knows. What chrioli is suggesting sounds like a good idea though. Maybe the diabetes are causing some of the symptoms?