1. < Spine Health

Arachnoiditis: Looking to talk with others

Posted by arannek72 @arannek72, Jul 3, 2018

I just got diagnosed with arachnoiditis. The radiologist found it on my MRI. I have had 7 steroid injections and I fear that they have caused this chronic situation. My back is worse than it ever was.

Interested in more discussions like this? Go to the Spine Health Support Group.

kimspr3 | @kimspr3 | Sep 28, 2019
In reply to @arannek72 "I think you will find getting proper treatment for this disease IS like banging your head..." + (show)
@arannek72

I think you will find getting proper treatment for this disease IS like banging your head against the wall. I do my own research and get my doctors to order what I need. That doesn't mean I always feel better but it helps. Medical marajuana, specifically cannibis oil with equal parts THC and CBD, has been a huge help when opioids have failed to make a big enough impact. I know what this disease can do to someone's life. I live it. But looking outside of the box is going to get you farther than any doctor will!

Jump to this post

Hi don, I'm going back to try again, Medical Marajuana, . It' hasn't worked so far. Opioids don't wk. anymore.

REPLY
1 reply
cocodab | @cocodab | Sep 28, 2019
In reply to @kimspr3 "Hi don, I'm going back to try again, Medical Marajuana, . It' hasn't worked so far...." + (show)
@kimspr3

Hi don, I'm going back to try again, Medical Marajuana, . It' hasn't worked so far. Opioids don't wk. anymore.

Jump to this post

Just tried a half a gummy at night so far helping with relaxing my neck. I can’t and don’t know how to smoke so gummies it is.

REPLY
3 replies
kimspr3 | @kimspr3 | Sep 28, 2019
In reply to @joanmahon "Please be patient. He has RETIRED but keeps a very small staff to help with his..." + (show)
@joanmahon

Please be patient. He has RETIRED but keeps a very small staff to help with his THREE websites and RESEARCH. In my long experience he eventually gets back to you. However I have been a patient of his office since 2017 and he has still been responding although it can take several weeks. This disease has thousands of distressed patients in the US and many more around the world. Please please read about the disease. The only treatment is for PAIN and we are in a very fragile situation in terms of pain meds.

I just came across a relatively new website from the NIH (National Institute of Health.) which lists Arachnoiditis as a Rare Disease and excellent info on symptoms and treatment. But we still suffer from a lack of medical personnel to atten to this. Let’s hope that medical schools finally teach more on “rare diseases” — of which there are hundreds

By the way, you might like to know ARC and AA HAs now been recognized by the SSA as a reason for Disability. I think this happened only this year.

I am still in Jacksonville and having tough time responding to all. Please forgive. I highly recommend the Mayo Pain Rehabilitation Center. The concept is to learn COPING STRATEGIES with intense exercise, occupational therapy and even biofeedback. ANYONE with conditions causing PAIN should consider this Mayo program. Am a total convert.
Soft hug to all, Joan

Jump to this post

Joan, my road to AA started in 2008, never really had any care or recognized. May I ask when you were told you have AA? What is ARC? I am not allowed to have any exercise causes so much pain. After Fusion 2016 Rehab. Kessler Institute, Steve Reeves, Actor rehabbed there. Great place. They were very careful with me knowing I have AA. No real exercise, but they did things to my body hat helped so much. No added pain. I am a member of NIH. Medical Schools, courses in AA!! Neurosurgeons MUST inform Patients who are having spine surgeries, epidurals and more of the dangers of AA. Legislate a bill that Patients and Doctors must sign of the life changing effects of Spine surgery and anything else that deals with the spine. The Patient than can research, seek anything that can help learn about AA. and make their decision. I would NOT have had the surgery but thats me.

Being this way, My God, Living like this was not MY Choice, Was not born this way, a car accident, no. I hear cars going by early morning, some going to "work" sometimes I cry. Adding PTSD. They don't go well together.

REPLY
kimspr3 | @kimspr3 | Sep 28, 2019

Have you seen a Pain Management Doctor? Did you receive any guidance?

REPLY
kimspr3 | @kimspr3 | Sep 28, 2019
In reply to @cocodab "Just tried a half a gummy at night so far helping with relaxing my neck. I..." + (show)
@cocodab

Just tried a half a gummy at night so far helping with relaxing my neck. I can’t and don’t know how to smoke so gummies it is.

Jump to this post

You don't have to smoke. Some states allow it to be put in food. NJ, no. There are recipes on line. CBD oil. CBD pills.

REPLY
kimspr3 | @kimspr3 | Sep 28, 2019
In reply to @donfeld "I will and wish me luck for all of us with AA" + (show)
@donfeld

I will and wish me luck for all of us with AA

Jump to this post

Don,You will become a Pioneer

REPLY
2 replies
Donald | @donfeld | Sep 28, 2019
In reply to @kimspr3 "Don,You will become a Pioneer" + (show)
@kimspr3

Don,You will become a Pioneer

Jump to this post

Let's hope so Kim because we need something as we're suffering so!

REPLY
2 replies
Donald | @donfeld | Sep 28, 2019
In reply to @kimspr3 "Don,You will become a Pioneer" + (show)
@kimspr3

Don,You will become a Pioneer

Jump to this post

I hate to hear you're suffering Kim. I'm not there yet and I hope I don't get there yet but to hear you makes it even more important that we find some help. I think very aggressive in my life and everything I've done with cancer twice and now this I have saved my life a number of times but maybe this is the third strike out. I hope not and I will fight for us and let's see what happens. Hang in there we love you and take care. I'll be back I can't wait for this new Matt that's coming to hopefully help ease the pain. Don

REPLY
1 reply
Donald | @donfeld | Sep 28, 2019
In reply to @cocodab "Just tried a half a gummy at night so far helping with relaxing my neck. I..." + (show)
@cocodab

Just tried a half a gummy at night so far helping with relaxing my neck. I can’t and don’t know how to smoke so gummies it is.

Jump to this post

Excellent Kim

REPLY
1 reply
kimspr3 | @kimspr3 | Sep 28, 2019
In reply to @donfeld "Let's hope so Kim because we need something as we're suffering so!" + (show)
@donfeld

Let's hope so Kim because we need something as we're suffering so!

Jump to this post

Jon, I can rid myself of the anger I have for that first surgeon, Dr. Carl Giordano, Morristown NJ. Can't believe all the Lamina he removed. How Do You feel about it? When drs hear about it they don't say anything but their faces do. I want to send him a letter so badly. He took my husband and my dreams.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.