Posted By CCF Neuro[P]MD, RPS on May 04, 1999 at 11:26:16
Topic Area: Arachnoiditis
Hello, I am so glad to have found this site! I have recently been diagnosed with arachnoiditis. I am 37, female, who had serious MVA when I was 16, crushed L-2 vertebrae, had Herrington rods and fusion from T-12 to L-4 (this was in 1978) Was very fortunate - no perceptible neurological damage, just come loss in sensation in area of incision and top of thighs. In 1992, had severe sciatica, they did Myleogram and had surgery - complete laminectomy at L5-S1 for serverly herniated disc. Have never quite recovered. Every time I tried to get more physically active I would " flare up" with inflamation. Have never been able to get off of Daypro (anti-imflamatory) since then. Until this past Fall I had only taken pain meds on rare occasions (vicodin). Now I take several drugs for pain, sleep, etc.
I have trouble walking for any distance without pain and burning in legs and feet, and low back. Had problem in Fall with pain in shoulder and hands, including burning and swelling. Aslo extreme muscled tightness and heat coming out of neck area. MRI showed some buldging discs but nothing that would explain my symptoms. Was diagnosed with Carpal Tunnel but one doc told me my carpal tunnel was not "typical" and didn't think surgery would help. I went to intensive physical therapy for two weeks at the Myofascial Release Center in PA ( I was familiar with this therapy and it had always helped) By the time I came home, my hands
were working fine and I was standing straighter and taller than I had in a long time. I thought I had finally turned the corner!!!! Imagine my discouragement to develop neurological symptoms the month after I came home! As part of my self-treatment I did very simple sustained stretches for approx. one hour per day. One of them was to lay on a small four inch ball under my sacrum for 45 minutes each AM to stretch the dural tube. I knew I had stenosis at T-10 because I had been told that before my surgery in 1992. They gave me the option then of having the stenosis opened up, but since I was having no symptoms, we opted to leave well enough alone.
Anyway, I did not think the MFR treatments or the home exercises they gave me would make me worse. Now I fear that they have. I first noticed numbness in my toes while laying on the ball. Then I started noticing a burning in my tailbone. then my whole left leg went numb and I starting tripping over my foot and loosing my balance. then, I started to loose sensation in my left buttock, left hip, left genital area, and decreased sphincter sensation and control. All of his developed within two months time. I went to my family doc who sent me immediately to a neurosurgeon who sent me immediately for a myelogram. Diagnosis: moderate stenosis at T- 10, one of the hooks on the rods is pressing against the spinal cord also (T-12 I think or L1) and ARACHNOIDITIS. He said he could easily decompress me, he thinks without aggravating the arachnoiditis. I went to a neurologist for a second opinion and she agreed overall with him. they both said that they would not recommend surgery unless I get worse. So what am I supposed to do,sit around and wait to get worse and completely loose function? Up until three weeks ago I worked full time, although it is a struggel. I was also dismayed that the info I received from the neurologist did not jive with what I have been reading in my research. I feel very confused and scared. I now think my home exercises and perhaps the hands-on treatment made my arachnoiditis worse. I am sorry this is so long, but my case is somewhat complex.
My questions: 1) could phycial therapy make me worse? I am thinking of going back for an additional three weeks 2) what is the likelihood of this surgery making me worse? 3) could the current neurological symptoms improve since they same on so suddenly? 4) if so, what can I do to increase the odds of this happening? 5) is arachnoiditis a current inflammatory process, or is it just caused by a previous inflamatory process as I was told my the neirologist? 6) can arachnoiditis "flare-up"? and are those flare ups in pain or also in neurological changes? I was told it does not flare up, although that seems to contradict my experience. 7) should I stay off of my feet to slow the progression? right now if I am on my feet, the numbness gets worse, the pain in worse and the muscles in my left leg tighten and spasm. I can barely walk at all and it is becoming difficult to drive..
Please help...I need some accurate information and informed opinoins. My pain has been manageable. I always knew I would have back pain, but I never knew I could loose the use of my legs, bladder function (currently experiencing "frequency", bowel function ( currently decreased) and sexual function (currently decreased). I am so young to loose all of this. I am still in disbelief that this is happening. Any information and opinions you can give me would be helpful. I have some heavy duty decisions to make and I just haven't found any docs who are willing to really discuss this with me. I'm not sure they know enough about it.
Thank you so much for your time and consideration of these questions. Again, I apologize for how long this is.
Sorry for such a long, long delay in trying to answer your posting. How are things now? There is usually a balance between surgery and medical management of a spinal problem. Currently things are getting worse, albeit slowly. Whether this worsening is due to the inflammation from the stenosis irritating the nerve versus the PT is difficult to tell over the internet. It may be an overall worsening from the stenosis which the PT is currently not helping (further irritation from the excercising). I would think that letting the inflammation calm down a bit, then having the PT would answer your question. If the inflammation calms down and the PT makes it better then you have your answer, and visa-versa. Surgery is almost always difficult to predict. Usually it is the last effort, and many times the process or etiology is worsened by the time surgery occurs. So naturally, the outcome is worse. However, if done at the proper time (good communication with the neurologist and neurosurgeon) then the maximium benefit is seen. Maybe, it might be a good idea to get a second neuroloigcal opinion. It is my belief that arachnoiditis can flare. Take to your PT and see what they think, because they know you best. I would think taking time to let this thing calm down and see if you better. Let us know how you do. Again, sorry that your posting got lost in the shuffle.
CCF Neuro MD
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