Arachnoiditis: Looking to talk with others

@donfeld I understand you are looking to learn from other members with Arachnoiditis if they have been treating with a pain pump and if it has been helpful.

You will notice that I moved your post into an existing discussion for members with Arachnoiditis so you can learn from one another.

Can I start by asking if you have discussed this option with your doctor?

I was diagnosed a few more than ago with Arachnoiditis by a neurosurgeon. He sent me back to my family doctor with the comment no injections in your spine. I currently don't have a reason this disease occured. I had no injections or surgeries of the spine. I fell shortly before the symptoms occured. Pain didn't start for about a month. Pain in left hip down back of leg to top of foot. I am nw on gabopentin and increasing every four days. At this point it is better but not sure if this after what you call a flare up. This is new to my family Dr. Today I am having burning and pain in my tailbone area but it is mild. No pain in my leg. Not sure what sites are dependable for information.

Correction above - a few months ago

Hello @janetsue and welcome to Mayo Clinic Connect. You mention you had fallen just before your symptoms set in. Did you share this with the neurosurgeon you saw and what did he/she say as to if that could've contributed? Also, did you understand why he/she noted not to have injections in your spine?

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

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.

Hello Ralph,’
Thank you for sharing your terrible moments and suffering
I hope that you have many good days and few bad days
In my case I also suffer from Ityer neurological conditions and autoimmune conditions
I got to a point in which I just decided to use my wheelchair or scooter when I need them
I am 72, 4 grandkids
They all gave accepted my disability and I try not to show my pain. I think we are pretty strong don’t you think?!
Question : your chiropractor also helped you with your pelvic pain?
Take care and thank you!

Yes chiropractor definitely helped. I have 9 granddaughters, 3 great granddaughters, one great grandson and one in the way. They seem to think I am the rock of Gibraltar. I still work 3 + days a week in my teaching career and am thankful I can. I don't want this to get worse. I want to stay active for a long long time even though it is difficult. Thank you for your thoughts. Hang in there.

Please avoid invasive procedures that can make it worse. There are so many natural methods to increase comfort and mobility.

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