L5-S1 herniation neurogenic bladder not Cauda Equina

phugoi1982, I’m sure that I suffered more in the nursing homes than most of the others, and for exactly the reason you gave,... I was alone. Dementia patients were having their hair brushed and being treated kindly. Cantankerous, loud, demanding old folks whose families visited them were treated with respect. But me,... in my right mind, but needing bowel help and a cushion for my chair, was ridiculed and obstructed at every turn. I fought my way out. FOUGHT my way out. Look into subsidized housing, educational opportunities, computer online jobs. Get out where there are people,... meet them,... even if it’s to a health club. Meet people who are not employed by the government. Employees have to parrot the party line. I’ve learned things that I never wanted to know.

Condolences, phugoi1982. It's amazing that you were working.

Phugoi1982,

I just all day reading this whole thread!! Are you still on here? I am having the EXACT same thing as you, ...well simplistic experiences, down to the hypochondriac.

I too have a congenital defect at L5 but it depends on what kind of congenital defect depending on what MRI report you see. I have been having bladder/bowel symptoms for over 8-9 years. I have always had lower back pain. Even as a teen I went to a chiropractor for low back pain. In my 20’s I was diagnosed with degenerative disc disease and Hashimotos thyroid. They thought my thyroid was cancer and I ended up having it removed And final pathology showed precancerous. Thank God.

I first noticed the what I call “urinary hesitancy” about 9 years ago. I would tell my primary who would joke that it sounded like a prostate problem (I’m a female. I don’t have a prostate). Totally blew me off. It started to take longer and longer for my peeing stream to start. I would be sitting there waiting to, sphincter relaxed, released and it started to take over 5 minutes!! My dr finally sent me to urology. They said I retained minimal and follow up with neurology. I was already seeing neurology for not only my lower back pain but neck pain. I had abnormal MrIs with a bunch of findings I didn’t understand. They told me my lumbar spine problems weren’t surgical. I could try epidural injections. Which I did and they didn’t help. I did need a fusion at C5-C6. At this time in 2012 I only had the delayed start to urine and they weren’t concerned.

My neck fusion was fine. But anytime I vacuumed or leaned over the sink to put makeup on or brush my teeth or dishes my lower back midline and to the right a little would burn excruciating and would get worse until I could no longer take the pain and would have to sit for it to go away. Lumbar MRI showed no changes.

I ended up in the ER with repeated UTI’s over the years. Pelvic floor pressure and undiagnosed abdominal pain. It was like these were “episodes”.

Then I started realizing I was soaked. In my underwear. I was leaking pee out and no idea. I have diminished feeling in the “saddle area”, my anus has prolapsed and I can’t have a bowel movement without digital help. The sphincter just stopped working. My urine stream became even more delayed and dribbled. Once I started going I couldn’t stop myself. I had no control over my anal or urethral sphincter. I was sent back to urology who again said I was only retaining a little bit of urine and sounded like neurogenic bladder and to follow up with neurology.

I also coincidentally at this time found a golf ball lipoma “fatty tumor” that if I pressed on it would reproduce the burning severe back pain I would have. They said impossible. Neurology and my primary. I insisted. I know what I feel. Also the pain was constant in that area when I would menstruated. Female drs said this could happen due to inflammation. Male drs said looked at me like I’m crazy.

I’m trying to cover all that has happened to me but it’s been a span of almost 10 years. I had the lipoma removed. It was very deep. But the pain was still there. Weirdly a year exactly later the golf ball lipoma was back. Right about L2L3 level. They were perplexed because I had an MRI 3 months prior and it wasn’t there. Had it removed again.

I started doing my own research. And thought it was eithier cauda equine syndrome but like chronic if that was such a thing because my symptoms were happening slowly over years or tethered cord syndrome.

I found a world renowned neurosurgeon in my state who specialized in tethered cord syndrome. I sent him my MRIs and a letter. He contacted me and wanted to see me. He told me I had Chiari Malformation and my brain stem was being compressed and that he wanted to do a neurological exam because based on my symptoms he believed I also had tethered cord syndrome. My reflex’s were abnormal and I had clonus. He said I most likely had occult tethered cord but wouldn’t know for sure until I was opened up. I decided to have the surgery. I ended up having a very tight tethered cord.

10 weeks later I am no better. My piformus muscle is finally unclenched for the first time ever on the right side. Still urinary symptoms progressing. Leg weakness still. Bowel leakage, constipation, anal prolapse and need digital help to have a bowel movement. Groin feels like it’s asleep. I bring up Cauda Equina again after he assures me I no longer have a tethered cord and that I would know if it worked by now. I trust him but that just means to me the tethered cord was incidental and weird but not the cause of my problems. He tells me it can’t be cauda equina because nothing is there on the MRI. I want a myelogram then. Because something is wrong! I’m not going to be in a wheelchair in a diaper with a cath because I’m not typical. His reason is because it’s not on the MRI. The cauda equina compression. Well eithier was my tethered cord. It was occult. Meaning hidden. Why can’t this be the same? He wants me to go back to urology. Maybe I’ll actually get testing. I can’t feel when my bladder is full. I go when I think I haven’t gone in a while.

I also have some pelvic hip symptoms. For years. I have bilateral sciatica. And ass pain. My legs shake and I get the dreaded burning pain now from just standing or walking too long now. Usually about 30 minutes.

I have anxiety. So my family says it’s that. It’s not. It contributes to my anxiety.

I have never had imaging of my thoracic and i do get pain there. I’ve had multiple fractures. For no reason. L5 and my sacrum. My pubic bones seperated when I was pregnant. I’ve have Ehlers Danlos and hyperflexion in my c spine. Neuro has never commented on any of that. Did you get your operation?

Sorry so long. But I felt so similar. I’ve also had my psychiatrist try and call my drs and tell them I was crazy. Complete bull s***.

I need someone who can have an open mind and evaluate all my symptoms. Not just an MRI. As I’m pissing myself. And leaking s***. Ok.