Arachnoiditis: Looking to talk with others

I was diagnosed twenty years ago with
“Scar tissue” in the spinal cord first. Doctora at the Mayo Clinic called it arachnoiditis. Cauda equina “ clamped up”
Terrible pelvic floor pain, terrible stiffness and pain in the back of my legs ( on and off )
I also suffer from intractable trigeminal neuralgia and autoimmune
Conclusions ( personal only )
Gabapentin is a terrible medicine
It causes amnesia ( memory loss ) on me
I have a pain pump but ends in my brain only for TN
Arachniditis is hard to treat. Epidurals and blocks haven’t helped me
Last successful treatment for pelvic floor is very specific physical therapy with the best P therapist ever doing stretching excercises and receiving special “ massage “ at the treatment facility. Pain is far from gone but I feel more “ lose “ in that area whuch adds to comfort
I am using wheelchair and electric scooter but walking now around the house . Huge improvement
Stiffness and pain in the back of my legs is there. Pain in joints there on and off
Don’t let them inject more stuff in your spine. We, people with arachnoiditis luck an enzyme that dissolves the sacar tissue so we build more if it
Hope this will help!
Arachnoiditis does not have a cure
We have to help ourselves and meditation is another tool
Good luck dear arachnoiditis friends
Please post if there is something new !
Thank you soo much!

That is pretty much what my husband is going through. It has destroyed his feed and hands. Lumbar pain is always there and the feeling of ice water in his legs and feet. It is what is it. PT does not help. He just lives with it.

Has anyone been diagnosed with Adhesive Arachnoiditis?

Yes, I have. Might I suggest visiting https://arachnoiditishope.com/ It is a very comprehensive actively maintained site with a host of information on treatments, slowing progression, etc. I’ve found it extremely useful and would probably be in a wheelchair by now had I not discovered it.

Has anyone on here been living with this horrific, painful disease?

Hi @bobmiller001 @nebarnes69 @houmaindian. You'll notice that I've moved your posts about looking for others with spinal adhesive arachnoiditis to the Spine Health group in this discussion that @arannek72 started to gather everyone together:
- Arachnoiditis: Looking to talk with others https://connect.mayoclinic.org/discussion/arachnoiditis/

I did this so that you can more easily connect with fellow members like @judithelaine @bear338 @tepping8382 @lynneat @rlcglds @constancebabe @kenyalama @julesm @joanmahon and many others.

Bob, Nebarnes, Houmaindian, tell us about more about you. How long have you been dealing with adhesive arachnoiditis? What helps?

Pain in my legs and feet. Can hardly walk.

I live in Phoenix I. Need a diagnosis from a doc I have all the symptoms

Joan,
Was your consult at Mayo Clinic of any help? Who did you see? I am looking for someplace that has any knowledge of arachnoiditis as I have just lost the ability to walk.
Thanks
Johanna
Johgar@sbcglobal.net

My arachnidalus was caused by a knee replacement operation by a stupid what do you call those doctors so anesthesiologist they spotted it starting that year about few months later in an MRI nobody did anything about it when they saw it they just ignored it either how all the doctors behave the following year when it got severe and it showed up fully grown whatever it is start hurting pretty bad and I tried to get doctors to fix it and they say the only thing that can be done is pain medication I'm allergic to everything plus I have polyneuropathy I don't know what to do the doctors are useless the doctors only collect money and I I've got a lot of anger issues over how our system works in this country now if anybody else knows where arachniditis could be controlled without all this stuff I don't know where to go I am on a new thing to start because I don't know how to put this so let's go back a little I am on Prednisone two and a half millimeters to get some of this information down now I started this week I am also on blood thinners cuz I have an antiphospholipid syndrome there is and I have polyneurite neuropathy and none of the antidepressants help so I don't know where to go if anybody else got