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Arachnoiditis: Looking to talk with others

Spine Health | Last Active: Apr 16 10:18am | Replies (386)

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@kenyalama

I also have arachnouditis causing pelvic floor dysfunction ( diagnosed at the Mayo Clinic) and now also dealing with Trigeminal neuralgia and RA

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I also have arachnoiditis and have spent much time in wheelchairs and on crutches and in horrible pain. When I learned I had arachnoiditis my primary care doctors admitted to not knowing much about this so could not help me. The pain specialist suggested the electric stimulator. I went home and began researching this disease. This was quite a few years ago. I am 80 as of this year. I had a filed laminectomy when I was 26. I had a myelogram (and in those days I was the first one ever done by that doctor and by that hospital). It was a horrible experience rending me bed ridden ridden with back spasms that caused my back to arch backward. I couldn't walk after than even before the surgery. That procedure caused an infection. After two weeks bed ridden and telling them I was sure I had an infection it was surgery time. They did the routine blood works and said "You have an infection. We will have to postpone the surgery and treat the infection." I had walked into the hospital with a little discomfort in my left leg -- and I mean a little. I came out of the hospital in a wheelchair unable to take care of myself at all. After about 6 months of not being able to walk, get up, etc. a near stranger insisted I see her chiropractor. I was helped in and on the table and x-ray. He said he could help me. After about 3 months of daily therapy I was released to be seen once a month he said for the rest of my life. Oh by the way the first treatment left me walking. But thereafter without any notice I would suddenly be hit with such pain and paralysis several times a year for 40 years. Flexaril and Tylenol III would put me in a near comma but stop the severe pain but still I would be immobile dragging myself to bathroom pulling myself up onto toilet -- horrible horrible horrible. Turing in bed would cause this. Taking something out of oven - Turkey at Thanksgiving -- ham at Easter etc. Over and over. I started working on some exercises for flabby leg and apparently strengthened my lower back and began being able to turn over in bed without hurting myself. But the twice a year events didn't stop. I began leaning to one side and pain continued. I had pain shooting down my thighs. Had feeling of water trickling down my inner thighs. Began having excruciating central body pain shooting down my spine and out my seeming vagina. I also had had a right hip pain that caused more inability to walk. My son, a doctor, said I had paraformis syndrome. I went to Mayo - they examined and did another MRI and described all the degenerative diagnoses and certain vertebra had collapsed causing me to lean to one side. Did injections which didn't help. I also had other injections at another spinal clinic which didn't help. At some point went to a 3rd spinal clinic and more injections that didn't help. Finally my doctor sent me to the pain specialist who did his own MRI and discovered arachnoiditis as I first mentioned in this message. I contacted my beloved chiropractor who was located almost 2000 miles away who said "inflammation -- get it down." At this point I can't get out of chair, walk, lift myself up. I started the anti inflammation diet as much as I knew how, and I stopped the bad snack stuff and drinks. I started taking 1.8 g of MSM 2x daily. Within a couple of months I started to improve. I still have trouble walking any distance and have to use shopping cart when shopping and walking across parking lots. I sometimes have to use tramodol and flexaril when I have terrible terrible leg cramps at night but very very seldom do I do this. I have found that if I lie with pillows under my lower abdomen and upper hips on my tummy I can instantly stop the cramps. I wish I had know this much earlier because I had spent years of no sleep because of these cramps. Bottom line is that from my research I had determined that to do the electronic stimulator, to have any injections, or new surgeries would cause more trouble and more scar tissue. I believe if I had never had the original procedures I probably wouldn't have arachnoiditis. I have continued to research and thus found this website. I have just recently found Dr. Forest Tennant You Tube presentations on arachnoiditis. As arachnoiditis has no cure pain management has been the issue. But now he thinks there are a few drugs that can really help the underlying cause of arachnoiditis that are not opioids. I am so much better off now than I was over the past years. I know I will not allow any invasive procedures ever again and so regret having the myelogram, the injections and the surgery. I believe muscle strengthening, stretching, being really careful not to over do and never lift heavy objects no matter how good a day you are having. I was back in wheelchair for several weeks after having lifted a box up over my head because my boss wanted me to. It wasn't heavy for a 'normal" person but for me -- yikes.