Discussions By Condition: Medical Stories

Neurological deterioration, please help

Posted In: Medical Stories 3 Replies
  • Posted By: katclem
  • February 2, 2008
  • 02:29 AM

I am a 44 yo female who is deteriorating neurologically. I have suffered from back pain my entire life. I have had so many broken bones and accidents (starting at age 5) that it was always attributed to that. In 2000, I was dx'd with Tethered Cord. I had a release done which went well and allowed me to walk and work again. In 2005 I fell from a horse right on my surgical site fracturing the sacrum and coccyx (juts forward). At the time of the accident I lost bowel motility for almost 3 weeks (very scary) but it did come back. Since the accident I have had severe nerve pain at the coccyx (burns constantly) sometimes in anus or vagina, sacral pain, hip pain, pain down right leg to foot. Over the last month I have had increased pain, now goes down both legs, have lost sensation in parts of two toes of left foot, cannot empty bladder (which has led to a UTI which I could not feel), two episodes fecal incontinence (soft stool) but in order to have a bm I have to wait for rectum to fill and then strain and manually "push" on vault area to defecate (numerous times daily). I am losing ability to orgasm, Right leg occasionally just gives out on me, and alot of stiffness in neck and upper back (which may just be because of tensing from increased pain or previous injuries to those areas). I wrote "AskaNeurologist.com" and they replied and said to be seen immediately. Because I just moved and it would take months to see a neuro I went to ER. They didnt even do a neuro exam, offerred me pain meds which I refused (they dont work anyway). They didn't even investigate the possibility of a UTI even though I complained of not being able to empty the bladder, in other words, they didn't listen, and diagnosed it as an "exacerbation of chronic back pain". They did however give me a referral for a neuro and an out-pt MRI at my request. I was thinking possibly my cord had retethered but they say it hasn't, just a bulging L5 disc. Saw Neuro and found that I have clonus at the ankles and hyper-reflexia elsewhere. He says is indicative of upper motor neuron lesion ie MS, tumor etc. The MRI was of the lumbar spine only. Now they want to scan my brain, upper back etc. I have no health insurance, am unable to work because I cant sit, stand or walk for any length of time and won't qualify for Medicaid for another two months because of a disability insurance claim I am collecting on. I contacted NIH to try to get into a clinical trial but they are not interested in my case. I have had my MRI forwarded to my neurosurgeon who did my tethered cord release and am waiting for his reading (in 2000, I hade the bulging L5 disc as well and 2 ortho surgs said I needed disc surgery, my 3rd opinion revealed Tethered Cord so I am a bit untrusting due to what appears to be lack of knowledge about these conditions). I went to a multiple symptom diagnosing page and it pretty much says spinal cord injury. Can this be a progressive thing? In other words, is it possible that when I fell in 2005, I damaged the spinal cord and have had the pain and such but now it is progressing to bowel and bladder probs as a natural course or should I be alarmed and run up tens of thousands of dollars of bills because if I don't I will wind up a para?? Is it possible that the coccyx jutting forward is causing continual nerve damage which is progressing my symptoms? We tried to intra-rectally "pull" it back into place but it wouldnt budge, would have to have surgically removed if it is the problem. I don't want to over or under react. I have been dealing with my nerve pain by taking Cymbalta which makes it tolerable most days. We tried narcotics which did nothing and I have tried going off the Cymbalta but cannot tolerate the unrelenting nerve pain without it. I assumed that what was done was done so I did not mind "covering up symptoms". Now that I am progressing, I am not interested in "covering up the symptoms" until I know what is causing them so I can prevent further deterioration. If anyone has any suggestions, comments, info, etc please respond. I'm scared. Thanks.

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3 Replies:

  • Please look up Adhesive Arachnoiditis. You fit the bill perfectly. This is when the nerves in your spinal canal stick together & kind of short circuit for lack of a better description. The usual source for diagnosis is an MRI with contrast. The nerves may also adhere to the wall of your dural sac giving the appearance on an MRI of an empty sac. It is sometimes also referred to on MRI report as spinal scar tissue or "failed back surgery syndrome".Due to all your spinal problems this may lay in wait sometimes for many years & your fall may have been the catalyst that brought it out. The symptoms you have with bowel & bladder may be Cauda Equina Syndrome and goes hand in hand with AA many times. The Dr was correct in telling you to seek care soon. An excellent site is COFWA. There are articles written by Drs (one of which has this herself). They also have a group you can join with other sufferers who have a great deal of knowledge & can relate to your experiences & make suggestions. You do not need a formal diagnosis to join. Any further surgeries or invasive procedures on your back must not be done until you can rule this out. They could make it worse. Many sufferers use a "cocktail" of various drugs to deal with the pain or may have pain pumps implanted. It is also recognized as a qualifying disability for SSDI. Just one word of warning. Sometimes it is beter to get an outside Drs opinion since many Drs will "fail" to see it on your MRI if they have done any invasive procedure on your back(ie. surgery,epidurals, detethering, etc.) for fear of lawsuits. In many cases it is the Dr who inflicted this on the patient. Hope this helps.
    Anonymous 42789 Replies
    • February 2, 2008
    • 08:33 PM
    • 0
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  • Thank you so much for your replies, I will check into these things! :) I saw a Dr. yesterday who feels it may be the way the broken coccyx "juts forward" into a nerve bundle...in other words every time I move, it "scrapes" nerves. This theory would explain many of my symptoms and expecially my sensitivity to vibration. I am going to check into that too, found a surgeon in Texas who has done over 200 coxxygectomies (spelling) but I will be sure to rule out these other things first. At least I have some direction....which helps :) Katherine
    katclem 14 Replies
    • February 3, 2008
    • 08:39 PM
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  • just a note...I doubt very much if a person falls off a horse that they have lyme disease...
    Monsterlove 2921 Replies
    • February 3, 2008
    • 09:08 PM
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