L5-S1 herniation neurogenic bladder not Cauda Equina

Chroli, what you say about his chart possibly being 'flagged' and doctors skirting issues that could be fodder for later lawsuits sounds logical. Once bitten, twice shy. Doctors who have either been sued or listened to a colleague's ordeal are likely strategizing for their own professional survival ahead of caring for the optimal patient benefit.

It seems to be normal procedure that when doctors cannot find what they consider to be justifiable cause for someone's complaints to dismiss the patient as a psych problem. Once in a while you will hear one say "I just don't know" but usually they cover themselves by blaming the patient. You are right to be infuriated by it. It is also way too normal for diagnoses to be delayed by years, allowing symptoms to worsen. Patients are very often labeled as trouble-makers actually seeking drugs. Once this is in a patient's chart it can become almost impossible to get goo care or pain relief. All I'm saying is that you are not alone in this and usually, at least, docs at mayo are not disposed to blaming to patient for their symptoms. I'll keep fingers crossed for you. Wait, they are too curled up for that.

So I am finally back from Mayo Clinic with an update that should hopefully be excellent news. First off, I was seen by Dr. Hussman in Urology who was the former chair of the Dept. I underwent a Urodynamics and Cysto-Urethrogram and everything came back NORMAL. I was totally baffled by this but Dr. Hussman assured me that I no longer have a neurogenic bladder and this is excellent because despite my previous Urodynamics test showing a highly underactive bladder It's completely fine. I also asked him to test my bulbocavernosus reflex which was normal as well. This visit left me really perplexed because I wondered how I could have had loss of sensation with an abnormal test result and then more loss of sensation with a normal result. He subsequently referred me to Dr. Sandroni in Neurology who is an autonomic specialist.

She was absolutely wonderful. Brilliant and took time to contemplate my story and again look through all my old MRIs and said my back problems could not be causing my issues. Also, said based on my current MRIs there was no way I should be in this much pain and that the pain was likely muscular. She said my Cauda Equina was and is clean as a whistle based on the time lapse of MRIs I brought. She did a thorough neurological exam which was NORMAL except for extreme muscle tightness in my pelvic area which no other doctor noticed. She thinks Pelvic Myalgia is the source of my symptoms and that itself probably caused the abnormal urodynamics result which wasn't really abnormal but induced by the extreme tightness in my muscles. She referred me to a wonderful Physical Therapist who did the most comprehensive physical therapy exam i've undergone who seemed to confirm her findings and said all my pelvic floor muscles are very tight and spasmed. Probably the initial injury caused spasming of those muscles that was never addressed and the microdiscectomy itself that I had in 2014 made things worse. 

I've been referred to a good pelvic floor therapist in Boston who can hopefully address my symptoms. I am a little skeptical that something muscular could cause ED and loss of sensation but I really really trust these doctors here at Mayo. The Neuro assured me I'm neurologically completely normal and that i don't have autonomic dysfunction either. She never dismissed me though. And the physical therapist assured me the tightness i have in the pelvic floor muscles is more than enough to induce ED and loss of bladder sensation and discomfort. As far as the Urodynamics testing, i'm going to trust Mayo over Lahey Clinic in Boston. With all the testing done and normal results it is looking more and more like I never had a spinal cord injury and that I might have been wrong blaming the Neuros for not doing surgery earlier. However, I'm furious not one doctor even considered the possibility of my problems being Neuromuscular and instead I suffered for years with no treatment.

Anyways, I appreciate all the support on this forum and will definitely try to get the most out of the pelvic floor therapy and hopefully with time this nightmare will be over. 

Phugoi1982,

I live in the country of Sigmund Freud. SCI do not exist in this country although I had a friend who fell from a tree and broke his back when he was a child. From then on he was paralyzed from the waist down. He died 5 years ago.

I also know some other folks who are using wheelchairs. But most of them are classified neurological, functional, hysterical, somatoform ...

Please consider the legal aspects of SCI. Doctors usually do not like diagnosis with a high rate of lawsuits to follow as someone mentioned above.

Good to hear that you have found new therapeutical options. I am also glad to hear that your reflex has come back. So something has improved. Other improvements might follow.

But be aware of doctors that are too nice and friendly. They might consider ICD-10 F45 and take you for a ride.

Take care.

Sorry for being inaccurate.
That's what I was intending to express:

F45.0 Somatization disorder

www.icd-code.de/suche/icd/code/F45.-.html?sp=SF45

This is becoming a comedy of errors. Lol. Did you know that that last link opens in German?

So, basically, the doctors in question never want to call a person's paralysis "permanent". And a paralyzed person becomes responsible for proving, over and over, that he/she is still paralyzed. Have I understood the gist of what the medical system is doing there?