Any Adhesive Arachnoiditis members here?

My friend who has AA went to Mayo Clinic. After spending 2 days there he was told they couldn’t help him. He is now suicidal.

So sorry to hear this. I read that there is hope ahead for this disease. Tell him to TRY and stay strong. Never take the answer of there is no hope. I know it’s very hard when your in this kind of pain. God be with him.

Hello all looking for anyone, anyone who has any hope left with this terrible disease -
adhesive arachnoiditis and giant pseudomeningocele. I've about had it. In 2013 had a doctor attempt a 3 level fusion L3-S1 (only did 2 level) ripped two holes in dura and I lost most of CSF during operation. So couple extra days laying with head down (protect the brain right?) Wrong! Spinal nerves got clumped instead right? Worst pain in my life in 5 days hospital the burning the burning was crazy. It was my nerves clumping right? yep! Sent home to recover and after 4-6 weeks pain came back with vengeance and spasms galore locking up my whole bottom half of body. Went in to see doctor he sent me off to MRI and guess what? Huge seroma he called it. Its just water left over from surgery he said. Go here and this guy will drain it and you'll feel better right away. Guess what? it was communicating with the brain and I lost all my spinal fluid again within a month or two of surgery. 9 days in ICU with massive pnumocephalus hydrocephalus. they almost cut skull open to relieve pressure.....they should have. Now I am running deficits in multiple cognitive domains. Then the pain management nightmare since 2013 is well, you know the drill getting pain meds right? Were all drug attics. good grief. There is no opioid crisis, there is a fentanyl crisis and its alive and well. and Real Pain patients can't get relief. Ok enough of my rant. My MRI just before surgery showed no clumping and immediately after showed severe clumping. spinal nerves left without CSF will clump together immediately, immediately ok?. Dr. and his million dollar defense team won suit and I was out 200k expenses and a life of chronic pain suffering confusion. Is there any hope left for folks like us? I follow Dr. Tennant best I can and it is not stopping the burn, the twitching, the crawling critters, the fog, the staggering, the itching attacks in the toes, lightning bolts into the feet, the fatigue, the drip drip drip 20 minute trying to empty bladder.. Ok so it is helping somewhat but not what I want it to be, I'm miserable most of the time and it is slowly getting worse. I feel the next few years are gonna be it before its ridiculous. Been to Hopkins and UVA and they said were very sorry we've seen big messes like this before and your only option is to go to pain management. Were very sorry for you, good bye. Talk about feeling hopelessness.

Hello @the4curtins and welcome to Mayo Clinic Connect. You have been through an arduous journey and one that, no doubt, has brought on frustration. I wanted to connect you with others who have had some level of experience with what you have shared, so you will notice that I have moved your post here:
- Any Adhesive Arachnoiditis members here?: https://connect.mayoclinic.org/discussion/any-adhesive-arachnoiditis-members-here/

Members such as @lynetteh1 @mmata and @stormcruzzer may be able to rejoin and share with you from their experiences.

I know "Pain Management" sounds like a scapegoat to some people, however, I have seen some really great things come as a result of a family member having gone through a spine and nerve health and pain issue, so I wonder if you've given it a go yet? I have to admit I wasn't very open-minded myself when it came to the appointment for my relative as I really was hoping for more in the way of answers, however, trusting the process has bode well for him so I wonder if there may be some help and relief in story for you if you explore that route?

Have you considered another hospital for a third opinion?

Hi Colleen.

Thank you for replying. When he finally got an appointment in the pain management clinic, the "nurse" told him that his records had been reviewed by the doctor and handed him a script for Percocet, which was the standard for all their new patients. He had the option of saying NO, only because he had an emergency stash of the opioids, which had successfully treated his pain for so many years, Hydromorphone. All PCPs who are associated with local hospitals and that is the vast majority here, no longer will prescribe medicines for severe pain. After some experimentation, he is taking Exalgo ER and Horizant ER on occasion. They will not provide breakthrough medication nor alter his dosage of Exalgo ER to help him prevent breakthrough pain. The patients are treated as addicts or sellers until proven not to be by monthly urine tests for 19 drugs. Although, this has lessened in the past few months because I think the insurance companies started to balk at the incredible costs for such testing. Right now we are just stuck in this clinic, but when this last year of his job is done, we will try to find something else.

We were excited that our area just opened up a medical marijuana pharmacy, but the pain clinics will not keep on any patient who secures a script. I had thought that in an effort to help chronic and intractable pain patients lessen their opioid use and/or ease their breakthrough pain, the pain clinics would work with the alternative pharmacy, which has been licensed by the state. Guess not.

Thanks for the introductions. I follow a group on Facebook, which offers a broader range of contacts. I have searched repeatedly for specialists, but most are no longer in practice. There is Dr. Forrest Tennent in California, who specializes in AA. Dr. Gary of the Kaplan Center just outside of Washington DC also works with pain patients and uses some of the same protocol that Dr. Tennent does. That will probably be what we end up doing in the future. Yet, these physicians are considered alternative quacks by most main stream pain specialists that operate within the major hospital systems.

All in all, he is in much better shape than most other AA victims and we are grateful for that. Just angry that people with legitimate chronic and intractable pain have to be denied proper pain relief, while being treated abysmally, because of the "opioid crisis" caused by those who choose to illegally use and sell opioids. And..angry that this rare disorder is ignored by most pain doctors and medical schools and treated not as intractable pain, but as chronic pain or less.

Again, thank you, Colleen. And..thanks for letting me vent a bit, too.

-Jeanne

I ALSO HAVE AA. THE MORE PROCEDURES, SURGERIES THE WORSE IT GETS. I WISH I NEW THIS BEFORE MY LAMINECTOMY 2008. IN MY CASE NO MORE CAN BE DONE. DOCTORS, MOST PRETEND THEY NEVER HEARD OF AA! I LIVE IN NJ BUT WENT TO MARYLAND. AT THAT POINT I HAD NO IDEA WHAT WAS WRONG WITH LUMBAR SPINE. I DID A LOT OF RESEARCH. FOUND A WELL KNOW DOCTOR, RETIRED, DR. FORREST TENNANT FROM CALIF. HE WILL RETURN YOUR EMAILS. BY THE TIME I FOUND HIM IT WAS TOO LATE BUT WANTED HIS INPUT. IT VERY VERY HARD TO FIND DRS. THEY CALL WHAT WE HAVE "FAILED BACK SURGERY!!" THAT IS THEIR WAY OUT OF ANY RESPONSIBILITY. THERE IS NO TREATMENT THAT I AM AWARE OF. WE HAVE A VERY COMPLEXED CONDITION. BING, ADHESIVE ARACHNOIDITIS I HAVE BEEN LOOKING SINCE 2015. 2018 I ASKED DR. TENNANT IF IT WOULD BE A GOOD IDEA TO HAVE A PROCEDURE TO REMOVE SCAR TISSUE AROUND THE NERVES, ANSWER, NO! IT WILL ONLY MAKE ME WORSE. I WAS SO DESPERATE LIVING LIKE THIS I DID IT ANYWAY. HE WAS RIGHT, I AM MUCH WORSE. A PUMP, WITH THE BEST DR. YOU CAN FIND, HAS DONE MANY IMPLANTED PUMPS ETC. I STILL USE HYDROMORPHONE KEEP IT TO 2X'S A DAY IF I CAN. I HAVE JUST START A NEW MEDICATION ORAL CALLED NALTREXONE. START ON A VERY LOW DOSE. I RESEARCHED IT LOOKS PROMISING. I CALLED MY SENATORS, CONGRESS NO RESPONSE NO INTEREST. I WOULD LIKE TO GET PEOPLE TOGETHER TO BRING AA TO THE LEGISLATURE SOME WAY. THESE DRS, DID THEY TEAR THE DURA, WHAT HAPPENED WHEN YOU GAVE ME AN EPIDURAL, WHAT HAPPENED. WHY DO THEY SURGEONS ETC. CALL IT FAILED BACK SURGERY WHEN THEY KNOW DARN WELL. MY HUSBAND SUFFERS TOO BECAUSE I'M NOT THAT PERSON ANYMORE. MANY THINGS I CAN NO LONGER DO. I DON'T MEAN TO SOUND ANGRY, I'M SORRY. THE OLD SAYING, "A FRIEND IN NEED IS A FRIEND IN DEED"