Arachnoiditis: Looking to talk with others

Thank you!
I have been offered and rejected invasive procedures for arachnoiditis. . They only cause more scar tissue. I don’t understand why pain doctors still insist in performing them.
Meditation has been helping me to relax. I have an app for that haha

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.

I believe that I have arachnoiditis in my upper back area, but no doctor has diagnosed it. Arachnoiditis is harder to diagnose with MRI's in the neck area. It all started with a cervical (neck) steroid injection that went wrong. I have also been following Dr. Tennant. Do you follow his protocol? If so, what are you using?

I was diagnosed witharachnoiditis in the lower back at the Mayo Clinic and after an MRI with contrast.. but many years earlier another fixture had told me I have scar tissue in the spinal cord. recent MRIs here in Houston show that it is getting worse ajjjj
I try to follow Dr. Tennant.
I am taking the suplementos etc. It’s a bit hard for me because I also have Trigeminal neuralgia and other conditions that require surgeries or procedures. It is hard to keep it up lol
Are you able to follow his diet and exercises?

I was diagnosed witharachnoiditis in the lower back at the Mayo Clinic and after an MRI with contrast.. but many years earlier another fixture had told me I have scar tissue in the spinal cord. recent MRIs here in Houston show that it is getting worse ajjjj
I try to follow Dr. Tennant.
I am taking the suplementos etc. It’s a bit hard for me because I also have Trigeminal neuralgia and other conditions that require surgeries or procedures. It is hard to keep it up lol
Are you able to follow his diet and exercises?

In my case it was the Mayo that gave this disease when a herniated disc repair went bad as then punctured the arachnoid membrain and cause a major spine leak. I had a bulge the size of a grapefruit at the base of from the leak and took three operations to fix. Now I have Arachnoiditis which they saying I need a stimulator only because I asked for a MRI of my lumbar area with contrast to discover this terrible incurable disease. No help from any doctors there and all they said it won't nessesary get worst. I wrong they are will my increase in pain the rest my life. If gets where I am bed ridden I got my pills ready for good by sleep.

I believe that I have arachnoiditis in my upper back area, but no doctor has diagnosed it. Arachnoiditis is harder to diagnose with MRI's in the neck area. It all started with a cervical (neck) steroid injection that went wrong. I have also been following Dr. Tennant. Do you follow his protocol? If so, what are you using?

I was diagnosed witharachnoiditis in the lower back at the Mayo Clinic and after an MRI with contrast.. but many years earlier another fixture had told me I have scar tissue in the spinal cord. recent MRIs here in Houston show that it is getting worse ajjjj
I try to follow Dr. Tennant.
I am taking the suplementos etc. It’s a bit hard for me because I also have Trigeminal neuralgia and other conditions that require surgeries or procedures. It is hard to keep it up lol
Are you able to follow his diet and exercises?

Thank you!
I have been offered and rejected invasive procedures for arachnoiditis. . They only cause more scar tissue. I don’t understand why pain doctors still insist in performing them.
Meditation has been helping me to relax. I have an app for that haha

What medication? Are you taking MSM?