Arachnoiditis: Looking to talk with others

My heart goes out to you again and I hope you get some relief. If they anybody does any MRIs they must do it with contrast in fact I'm heading up to the Mayo October 14th and getting injections for Botox in 1 shot in my base of my skull for my radiation pain and I'm getting MRI with contrast to see if AA is up there as well in my upper vertebrae. Waiting for my map to come but I talked to you about that pemf and let's keep our fingers crossed because maybe it will work. Hang tough and I'm there for you. Don

Kim, look up Healthywavemat. That is what I ordered for AA. Keep you fingers crossed.

Hi Kim,
The cya club is the (excuse my french) cover your ass club. I got AA from an epidural injection. The doctor was rushing, she was having a hard ti.e and she forced the needle into my spinal cord. I felt it, screamed and immediately had a terrible headache spasms I had never had before. The doctor told me to wait and see if I felt the same the next day and if I did, she would give me a blood patch. My headache went away the next day and I only had the spasms sometimes so I thought I was okay. Four months later, the new pains were intensifying so my pain doc sent me for an mri. The radiologist very clearly saw AA. My pain doc tried to convince me it was just a coincidence.

I am so angry with the restrictions that the DEA has placed on our therapy! My therapist says that it's like when one bad apple runs the whole bunch.
I don't know where you live but I have had good success with medical marajuana. Equal parts CBD and thc in a concentrated oil has made my life more bearable.

I've been dealing with marijuana since the 60s and haven't stopped and never will and thank God. They haven't got it all those years and I still have it right as it's a natural wonderful no side effect drug that keeps us calm and collected. They had a special on CNN last night and it's moving in the right direction

Without reading ever post I can share what my VA pcp doctor told me that made sense to me about the VA approving the use of medical marijuana. He said that even if a veteran live in a state that approves the use of medical MJ as long as the federal law is in place the VA treats all use by veterans as a beach of veterans policies leading to termination of all medicine rx’d by the VA
Even if you are not a veteran I’m fairly sure his explanation applies to others as well.

It makes no sense to me that any and all medications that work should be approved even if the medicine is used “ off label “. I think that’s the term that means rx’d for something other than what it was originally rx’d for

don, arannek, I get it from a Compounding Pharmacy in Hackensack NJ, They get it from, [ imbuebotanical.com ] they have a high rating. Form Colorado. !00% organic CBD oil, Colorado grown hemp.

Thanks Aran, I will followup and keep it all going in the right direction. Try the CBD coffe that just got. Forget about how good it is for you as the coffee is the best coffee I've tasted in a long time. And as soon as I drank it I felt something coming on and within about a half hour 40 minutes I suddenly came out of my pain and started walking again which I didn't want to do cuz I didn't feel good that day. Try it they're going online it's I think it's there if you need more information I will provide it. Take care

thank again don, you are so nice. The care you are receiving is care I NEVER had. Good idea for brain scan. You sure are getting a good work up. I've had MRI with and without. Only showed how wide the laminectomy was. I had a MRI, Johns Hopkins, now that was extensive looked for everything. Showed Tarlov Cyst and something else I can't spell, I'll call it, some kind of node. That dr. said I have scaring around the nerves roots and A.A. . I have the proof. Mentioned so many things including the physical exam. Trying to get appt. with a Neurologist, have to fax as much info. as I can for appt. I read that AA is similar to MS?
Shot in your neck, that must hurt! I hope AA. Has not spread, my intuition say, NO.

When is the mat coming? I hope soon. I'm here for you too! Good luck on the 14th! Wish I could see your dr.. What state is it?

I'm still waiting for the mat and anxious to see what it is and how it works. If you're interested in seeing a great neurologist at the Mayo Clinic in Jacksonville is dr. Rozen who has been my doctor for years and and I've been told that he's the best in the country. He has helped me the most with my AA as the other doctors didn't know what they were doing and he's not a back specialist but he had a great idea and sympathy as well as a coordinator for me at the Mayo Clinic and he's a great friend. He has treated me for years for radiation damage from a throat cancer as I go into spasms and I look like an epileptic fit for about 30 seconds. He himself has gained weight over the years and I've asked him what the problem is he's having pain problems himself and he's on steroids and so he's gaining weight as he has sympathy for all of us. Hard to get to see but if you get to see him I know that he will help you and I have a friend waiting to see him. Take care