Arachnoiditis: Looking to talk with others

I tried both and they didn't help. I watched an on-line seminar with a pain management doctor from Stanford. He said only about 20% of his patients responded to neurontin and/or Lyrica. He recommends Desipramine (sp?), which he says helps 50% of his patents. It is an old tricyclic antidepressant similar to Elavil, but has less severe side effects. I haven't tried it yet, but intend to soon. Like most meds, it takes weeks to find out if it helps.

I've had AA for 17 yrs, but only diagnosed 3yrs ago. I searched for an answer myself after a Neurosurgeon told me, "I'm not touching your back!
You're Cauda Equina looks like a bowl of spaghetti. I have no idea what is going on."
I live in Boston, and there are multiple top hospitals here. I finally found a spine specialist who explained it. He was horrified to hear I was forced into 30 to 40 injections over 14 yrs (Even after reporting they were not helping).
I am 47, and unfortunately have become disabled to the point of using a walker, and other 'glamorous' issues like multiple incidents of incontinence.
I am as frustrated as most of you.
I have been flat out lied to. For example, one clinic told me they "Specialize in AA, and treat multiple patients with it. (I quickly got fired for non-compliance with care by refusing shots). Then my pain questioned by a Dr who has "a couple patients with AA who don't have any pain". (That has absolutely no bearing on my situation. I'm thinking, it's a pain clinic...why would a patient without pain go there?)
The same drs telling me how advanced my AA is from my obvious low function, and abnormal tests, are questioning my severity of pain.
But thank God I find small "wins", bc those are the drs who keep me going. I was recently told I cannot get the spine stim i was excited about, bc of a chronic infection issue in my body. So, just like the last 17 yrs, my pain is controlled by medication primarily opiates. Finally, I just want to say while discussing my diagnosis with my grandmother, who's been in a wheelchair bc back pain, she randomly said , "Its weird, I feel like water is trickling down my legs sometimes"...I was blown away. I realized mine is hereditary.

Xanna. Upon reading your post, I have experienced the same set of circumstances vis a’ vis the medical community. In many ways, medical “science” has given us a better quality of life as it relates to eyes, certain joints like shoulders, knees, hips, etc. However, with the neurology of spines, the medical community is found to be lacking.
This is made worse by the arrogance with which many pitch solutions that don’t work and (speaking from experience) many times cause harm.
Every day I wake up wishing I had never let anyone cut into my back.
I have no answers or suggestions to offer here, only a prayer and hope that you’ll someday find a solution to your pain and physical limitation.

I was diagnosed this year but am certain it started long before this year. The surgeon who diagnosed me told me no injections.

I have been told by others who use gabopentin that they have memory loss. I so far only take three doses of 200 a day

I am so sorry to find out how many of us are suffering with no light at the end of the tunnel.
Being in touch it’s comforting. I am among those who suffered memory loss with Neurontin. Did not even want to try Lyrica
Please post any new treatment any new treatment anyone is aware off.
Good luck to everyone !
Please post if anyone has been diagnosed with concomitant neurological diseases. In my case, in addition ti arachnoiditis I also SUFFER from relentless trigéminal neuralgia and CRPS
The latter has been almost dormant for awhile
Thank you all for your comments and posts
I now know I am not alone

Hello @xanna and welcome to Mayo Clinic Connect. I am very sorry to read of your experience and all that you have been through in your quest to find out what your body is going through. You sound like you have maybe found some doctors you trust now. Is that right?

I’ve had Trigeminal problem. Sorry to hear that it hasn’t gone away. Have you checked with your dentist or have gone to a TMJ specialist. Do you have neck issues? It’s worth checking out. There may be a misalignment in your jaw. I went to a neurologist and he gave me tegratol. I took it for about a week and stopped it. It can throw of your cortisol off. It eventually went away. It’s possible that I hit my head. I hope it disappears soon. Good luck with it.

I've been on Neurontin (gabapentin) for 9 years. I tried it when I was working before this but could not function. However after a failed cervical surgery that left me without the ability to move my arms for 10 months, I was able to adjust to the gabapentin. Each time my physical status improved (truly telling my mind to move my arms regardless of permanent sensory damage), pain increased and I increased the gabapentin. I had a difficult 4 or 5 years as I tried various medications and struggled to get mostly full use of my arms. I now take 2600-3200 depending upon what I've been doing and function without the "fog" and memory lapses. I'm very active. Fortunately, I was 65 when this all happened and had a working husband so I could afford medications and not working, etc. My entire spine is a mess with degenerative arthritis, bone spurs, foraminal stenosis, etc. But I'm completing family genealogy, taking care of our grandchild on occasion, quilting, gardening, etc. The best advice I received was to use my brain to tell my body what I want it to do. I have little if any feeling in my hands but am typing! Also, vary activities and find your strengths and weaknesses. Some motions cause me little pain, others can cause severe cramping. I'm also on 45 mg of Baclofen every day for the cramping and spasms. I've tried Lyrica, Cymbalta, and most of the others but find that Gabapentin and Baclofen together with Ibuprofen works the best for me. Good luck to you. Not easy to find what works best for you and then to adjust to it.

Hello @patriciaki and welcome to Mayo Clinic Connect. It sounds like you have truly taken your situation and found the way to keep going and enjoy your life. Thank you for sharing with members hope for finding their way to a better place with a positive mindset!

What would you tell someone who is just now starting this journey with arachnoiditis and pain management?