Any Adhesive Arachnoiditis members here?

Good afternoon! Hope you are having a nice low pain today. I was pretty good when I got up this morning, but started going down hill a few hours ago, so off to the couch and my ice compresses, my best friends!! Ice really helps. I wanted to let you know that you are not alone, I have said the same thing many times to cut off my right leg, my left leg is not as bad as the right one, the pain in my left one usually goes from the top of my leg and stops around the knee area. My right leg pain goes all the way down to the bottom of my foot sometimes.Just try to take it one day at a time and I guess we should embrace the days that aren't as bad.
Best of luck to you ad warm wishes,
Kathryn

Hi. My name is Dianna and I have been diagnosed with AA for about 6 years now. I live in South Carolina.
I found a wonderful doctor on Hilton Head, SC. He has been working with me and we finally found the right combo
of drugs to treat my AA. I know there is an opioid epidemic going on, but with the right doctor monitoring me, I have led nearly pain free life. I suggest you find the right doctor for your husband. This disease is terrible enough to live with, you should have a doctor that will listen to and help you with your pain. Good luck!

Hello, @carolinapearl53 - great you've found a wonderful doctor. Will you share more about the combo of drugs you and your doctor found treats your AA well? Will you talk more about your process for finding the right doctor for you - what might you suggest to others?

Hi. My name is Dianna. I found out 6 years ago I have AA. Well, try and explain this one to your friends. I found a wonderful a wonderful doctor on HHI. I live in South Carolina. The doctor I found has allowed me to treat my pain with the meds he can issue. I am on medical marijuana, Amitriptyline, and hydrocodone. This man has saved my life. Without his help, I cannot imagine how I would feel. I had an MRI about 3 months ago, and unfortunately the nerves have already started to “clump together “. Not something I am looking forward to, but right now, there is not a cure for this disease. I wish you well, and should you be in the area (Hilton Head SC) I’m sure you could become a patient of his.

That is great! I'm at Mayo now having lots of tests. Meet back with my doctor on Friday morning and go from there. For the first time I feel like someone really understands and I'm going to get help! I've been on Amitriptyline and Toprimate for a long time along with too much Prednisone causing other problems. I need some kind of pain relief soon. Good luck and take care! Lynn

HELLO LISA, I HAVE A.A. STARTED SLOWLY SINCE 2008. WIDE "FAILED LAMINECTOMY" ALL THESE YEARS I HAVE LEARNED THOSE SURGEONS USE THEIR FAVORITE MEDICAL WORD THEY TELL THEIR PATIENTS, DIAGNOSIS, "FAILED LAMINECTOMY" FAILED BACK SYNDROME!! TEAR IN THE DURA, NEVER TOLD, PAIN GETTING WORSE, WHY, LETS TRY ANOTHER PROCEDURE.WORDS THAT WERE SAID TO ME, I ASK, WHY??? MORE PAIN, NERVES SPINE LEG GETTING BAD, HANDS JUMP, LEGS FROM THE NERVES. NEVER TOLD THE TRUTH. WHY ON AND ON. FUSION I SHOULD NEVER, NEVER HAD HAD. THERE ARE NO TREATMENT'S. I TOLD SOMEONE HERE TO CONTACT DR. [NOW RETIRED] FORREST TENNANT, CALIF. HE START THE ARACHNOIDITIS FEDERATION. YOU CAN CALL OR EMAIL. VERY WELL VERSED, RESEARCHER. I CONTACTED HIM ABOUT REMOVING THE SCAR TISSUE STUCK TO THE NERVES. TOLD ME NOT TO DO IT! I DID IT ANYWAY. WANTED THE PAIN TO STOP SO BADLY DID NOT LISTEN TO MY GUT FEELING. PAIN IS SO BAD. I DO HAVE A PAIN PUMP IT DOES HELP. IMPLANT SIZE OF A PACEMAKER, CATHETER IMPLANTER LUMBAR SPINE. IT'S PROGRAMED BY A NEUROSURGEON OR PAIN MANAGEMENT. CAUTION!!! BE VERY CAREFUL OF YOUR CHOICES !!!!!!!!!!!!!!!!!!!!! DO YOUR HOMEWORK!!!!!!!!!!!! COMPANY MY DR. USES, MEDTRONIC. THEY HAVE LOTS OF INFO. ON THEIR SITE OR CALL THEM. WHEN I'M WITH OTHERS IT TAKES THE PAIN AWAY A LITTLE. PLEASE BE CAREFUL.

HELLO DIANNA, I ALSO HAVE A.A. I HAD A PAIM PUMP IMPLANTED HELPS A LOT. IT IS PROGRAMED I RECEIVE HYDROMORPHONE ALL THE TIME WITH NON OPIATES ALSO. WITH THAT I HAVE A REMOTE CALLED A BOLUS SO IF NEEDED I PUMT THAT ON THE PUMP AND I RECEIVE AN EXTRA DOSE WHICH I CAN USE 7 TIMES A DAY EVERY 2 AND HALF HR. I WANT OFF THE OPIATES SO BADLY. DR. PUT ME ON A DRUG NOT AN OPIATE WHICH CAN HELP THAT HORRIBLE PAIN AND JUMPING NERVES. JUST STARTED WITH THE DRUG, VERY LOW DOES TO START. HELPING OTHERS IN MY P. M. OFFICE. WISH YOU GOOD LUCK!

Hi, @downeylynn - welcome to Mayo Clinic Connect. Glad you are feeling understood in your visit to Mayo Clinic.

Do you have a diagnosis of adhesive arachnoiditis, or is that what you suspect may be causing your symptoms? How have your tests been going?

To Lisa Lucier: This is not exactly a reply but a request from a very needy person who recently joined Mayo Connect while waiting for a reply from Mayo Jacksonville. As one of our Connect Moderators, I have a question, and can´t think of anyone else to turn to, or even how to approach you. I was diagnosed in 2012 with AA by ARC expert, Dr. Antonio Aldrete, but it had begun with a Pantopaque myelogram, laminectomy and spinal fusion 30 years before. I have been treated by my GP, with recommendations from Dr. Antonio Aldrete and the help of a wonderful physiatrist, both of whom have either retired or moved away from Florida-- so have lost both as my AA expert resources. Excruciating back and legs pain have been treated with Hydrocodone and Gabapentin since 2012. Just before he retired and closed his practice I managed to see Dr. Forest Tennant in California, but not as a regular patient, since I live in Florida. Since October 2018, new and distressing symptoms have emerged (incontinence, loss of walking ability and very dangerous gait, as well as diminished cognitive functions; ADL´s are practically nil, and I can no longer drive). The neurologist who conducted an EMG study (and found no problem) compared two brain MRI´s from 2017 and 2019 and informed me he is of the opinion that my case involves Normal Pressure Hydrocephalus, and suggested a Spinal Tap. He does not believe in the relevance of AA, and doesn´t understand why I am reluctant to do the spinal tap. I finally contacted Mayo in Jacksonville for an appointment--both for a second opinion and for a Spinal Tap, and have alerted them to history of Spinal AA. I´ve had my GP send them my records, as requested during a follow-up phonecall. I´m afraid I am losing thinking/planning abilities, and am so afraid cognitive losses are taking over so that it is more difficult for me to even figure out what my next step needs to be to succeed in getting this appointment. My GP agrees I need doctors like those in Mayo, with a team approach, to help with diagnosis and treatment, whatever they may happen to be. I realize that it could wind up being a periventricular shunt. But if Mayo in Jackonsonville can´t do it, maybe I need to go to Rochester or Minnesota or even Phoenix? I am open to any possibility you might recommend.

Can you help me think through what my next steps could be, Lisa? Should I be contacting Minnesota or Phoenix directly and starting all over?

Thank you Hon. Am really desperate and every day that goes by I fear more losses, especially those of cognitive nature. Thank you for any and all words of wisdom! Joan Mahon

Hi, @joanmahon - I'm hearing your feelings of desperation and especially cognitive losses. I'd feel that way, too.

What I'd suggest is that you contact the Mayo appointment experts, online or by phone, at this link http://mayocl.in/1mtmR63, and they can tell you how to best proceed.

A couple of threads you might want to check out are these on normal pressure hydrocephalus (NPH). You might share with the patients there some of what your doctor mentioned about NPH and see if they have thoughts for you.

- https://connect.mayoclinic.org/discussion/brain-injury-white-matter-encephalopathy-and-encephalitis
- https://connect.mayoclinic.org/discussion/nph-and-dealing-with-work/

I'd also like you to meet, if you've not already, @jenniferhunter and also @hopeful33250, who may have some input for you.

In the meantime, how are you managing your day-to-day life with the diminished cognitive functions you mentioned? In what ways are you seeing these show up?