Arachnoiditis

[darlin]

Dear Doctor, I've been diagnosed having arachnoiditis a complication of lumbar surgery.  For the past several months I've been experiencing mild to severe abominable pain, aching and cramping in my intestines. I'm wondering if this is related to nerve pain or if it's another problem?  As sometimes I feel a burning sensation wrapping around my sides from my (lower lumbar) back and twitching in my stomach.  I've been also having a few accidents with diarrhea and have slow urination that's not painful but I normally have to return to the bathroom to fully empty my bladder.  

I've tried to go for short walks but this aggravates the above and experience severe weakness in my legs, etc.  I had an appointment to see Dr. Benzel in February 2002, Although my Insurance Company feels I can been seen by another in their network such as UofM.  I understand they treat this conservatively as there no known cure.  

This is my question: If this continues to worsen does it become increasingly inoperable?  Do you get referrals from UofM?  In your practice have you seen any patients benefit from surgical intervention?  Thank you for your advice.

Sincerely, Darlin

[CCF-Neuro-M.D.-JT]

I reviewed our previous communications from Oct and Nov of 2001, and I'm glad you got an apptmt with Dr. Benzel.  The abdominal symptoms can occur with spinal cord problems, but usually at a much higher level than what you describe yours to be at (yours is at the lumbosacral level rather than thoracic which could cause an abdominal band like sensation). So it's quite possible that the symptoms are unrelated.
I continue to be concerned about your bowel and bladder symptoms, and wonder if there is something else (either in addition to or as a result of the arachnoiditis) going on in your back. The symptoms you describe are reminiscent of a disease called the cauda equina syndrome which is compression of the little nerve rootlets that come off the very end of the spinal cord. This causes bowel and bladder symptoms as well as leg weakness. In some specific cases reported in the medical literature, arachnoiditis can cause this but it does not by all means do this commonly.   Having Dr. Benzel take a fresh look at you and your films would be the best thing for you.

As for your questions,
1if the nerve compression continues and the symptoms worsen, there could be permanent damage depending on the actual cause, which means surgery may not be helpful if the damage is too far gone.
2. yes, we get referrals from U of Michigan (if that's what you mean by U of M)
3. as for typical arachnoiditis which is controversially associated with back pain alone, we find that surgery is not usually helpful.  
Good luck

[Iggy]

I was very concerned when I read your post.  You mentioned that you had an appointment with a doctor in February.  Is there a possibility of you getting that appointment moved up?  Your symptoms of muscle weakness, bladder and bowel disturbances are all too familiar to me.  It sounds as though your cauda equina nerves are being compressed, as mentioned by the above post.  From what I understand,in these situations, there is only a small window of opportunity to correct the problem...otherwise your symptoms could remain permanent,like mine.  Please check out the websites...www.caudaequina.org  and www.caudaequina.com.  You should be able to get some valuable information there.  Please try and move your appointment up!

[Kats]

I would like to make a comment regarding the arachnoiditis.  I have had arachnoiditis since 1972 but was not told that I had it.  I had two myleograms in February 1972 and in May 1972, both with surgeries each time.  The only thing that the doctor told me when he was releasing me, was that I would be in a wheelchair within five hyears.  I went through the years, haing flare-ups about every three months that would last about 2 or three months, I had a lot of episodes of falling where the effects of pain would last about 2 or 3 weeks, I would go into the hospital each time.  Until one time, the doctor said, well we can cut the nerve, I said, yes but I would never walk again, he said thats right, but you will never feel the pain.  As I know today, that is not true, if you have arachnoiditis and are even paralyzed you do feel the horrible relenting, insidious pain.  Then I decided that after that I would not go to the hospital no more when the flare ups came or when I would fall, that I would try and get over it myself.  Let me mention, that right from the beginning, I have never had any sexual feeling, I have a Neurogenic Bladder, doing cath in and outs 3 and 4 times a day.,  My bowel care is Monday, Wednesday and Friday, taking Biscodyl tablets to make me go, but not always working.  I have also got cauda equina syndrome, Fibromyalgia and am in such horrible pain all the time.  My doctors said and I have had many that I am one of the most severe cases that they have ever treated.  I have great doctors.  I too go to the VA here in Memphis and I could not ask for better care.  The last fall that I took was in 97.  I did not go to the doctor right away, but the pain started getting more severe, couldn't walk right, my legs kept going out on me, I couldn't sit for very long, or stand, or bend, or walk any more that about 100 feet.  My walking now, at one time without shaving to sit is about 20 feet,  I use a wheelchair now.  I can't cannot stand any length of time to fix upper, or even a sandwich.  My bladder has gotten worse, I now have to wear depends in addition to the catherizaing.  My legs have gotten weaker and without a dout the pain in my buttcks,  lower back , hips, knees down my legs and especially my feet, hurt so bad, I cry a lot and scream.  All those parts vfeel a lot of times like scalding hot water is being poured on them then the needles and pins and the knife stabbing starts.  I don't sleep at night even though my doctor has me on 100mgs of Trazadone.  My meds consisted of 240 mgs a day of morphine and 2-20mg of Baclofen, 2-Celebrex,30mgofTylenol with codeine, 2 every 4 hours, 2 a day of Clonazepam, Amitryptiline,(sp),Oxycodone, and now I am on the Fentanyl Patch, 50mcgs and oxycodone every 6 hours.  Believe it, please not one of these medications have helped me any.  None of it even phases it.  I am rated as having arachnoiditis with diffuse clumping very severe.  When they did the myleograms, the dye they used which was Pantopaque, and when they did the second myleogram the dye was still present from the first one.  Also, when they do surgery to remove a disc, they have to cut the myelin sheath to get to the disc, they are supposed to stictch the myelin sheath back up after the disc is removed, they did not do this, therefore the myelin sheath as the nearves were growing together and clumping the myelin sheath got caught up in the clumping and there it is, so the spinal cord is exposed when they removed the disc, at the l-4&5 and the S-1.  The s tomach pains that I have are doubling over pains.  they come on so sudden, that it takes your breathe away.  Like I said, I also have the cauda equina syndrome and Fibromyalgia.  I forgot to mention when they were also doing the surgery, the disc fragmented and fell down in amongst the nerves, they tried to dig them out, but did not get all of them, so I have fragments of the disc down in there.  I have had so many epidurals, so many Depo-Medrol injeections.  They tried to do nerve blocks, but could not do them because they could not get past the scar tissue.  This disease is the most horrible thing that I have ever gone through in my life.  I never thought anything could be so horrible.  It is hopeless, disabling, incurable, inoperable, insidiously painful disease.  for those of you that have it, I don't care what any doctors say, it is progressive.  It gets worse very fast.  The paraparesis that sets in  is very dangerous as far as your balance goes, because you fall a lot, if you can have a warning that your legs are going out, you can catch yourself but in doing so each time you pull and jerk your back.  I also have cervical stenosis, which the arachnoiditis does affect this.  Arachnoiditis affects the whole central nervous system, it does affect your sight eventually, and you may have a noise in your ears.  I had an evoked potential and it showde a lot of abnormal nerve activity in there.  They did an MRI on my head to see if I had MS, but this showed negative.  When I lie down , everything starts spinning for a few seconds and I get sick to my stomach.  I can't stand anything touching my legs because they are so sensitive and hurt so bad same as my feet.  When I have to go somewhere I just dread putting on socks.  I have problems with my feet and legs swelling so bad, I mean to the point that they are about three times their size, so then I have to go on Lasix and Potassium.  I also have rotator cuff syndrome and at first it was very hard pushing my wheelchair, but then the VA got me a light weight Quickie II which is much better, I just got it and already I notice a difference.  I have to say that before going to the VA for my care, I had Pru-Care insurance, they did test after test on my bowels and bladders and kept saying they couldn't find anything wrong, at the same time I was complaining about my back, but they did nothing about that.  If they would have done one MRI they could have found the connection and the answer to why I was having so many other problems, but they didin't.  so then when I fell, they right away did the MRI and found the arachnoiditis and that it was severe.  I commend the Memphis VA, for without them I probably to this day would never have known that I have it.,  They give me great care, no matter what department that I go to.  Now my pain doctor is talking about doing an implant, but I am not sure if I want that,  With my back in the condition it is in, I am worried there might be problems.

Thank you for listening to me, I hope I have helped some of you who have this disease and what to look out for.