Any Adhesive Arachnoiditis members here?

Posted by jeannels @jeannels, Oct 25, 2017

Hi. My husband has AA. I searched for physicians who specialize in AA and got an old post from 2014. Any updates? We are seeking a specialist somewhere near Maryland and are currently in a Pain Management Clinic, in a dead-end insufficient treatment protocol that will not operate beyond their narrow parameters, which are not working well. He got transferred when his PCP retired, along with 67 other Chronic Pain patients. He is the only one with Intractable Pain and it appears that no amount of educating the NP and MD is going to make a difference. Anyway, I am trying again to find answers after nearly 12 years of his doing very well and having several pain free hours a day on the regimen that various PCPs had him on. Thank you for any help or advice or links or news.

I wish pain-free days and restful nights for each of you. Gentle hugs.

-Jeanne

Liked by downeylynn

I have AA and a rheumatologist helped me. I have a doctor friend that has Arachnoiditis tell me that if I don’t get my inflammation under control I will never get relief. I went to a rheumatologist. My numbers were so bad I was put on steroids for two weeks. I was given Plauqenil and calcium channel blockers. My numbers went down for the first time in years. If you don’t get the inflammation down it will cause you a lot more problems. I wish someone would have told me this years ago. This is what helped me the most.

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Hi, @caklady – thanks for sharing your experience with seeing improvements in your adhesive arachnoiditis through visiting a rheumatologist and addressing your inflammation.

I'd like to bring into this conversation others who may be interested in reading about and discussing your experience, like @mdmo @ursweetpam @rachelarachgirl @gerisues @rpennino @peggyella @christinasuit.

@caklady – wondering if the steroids and getting your numbers down have reduced any symptoms you were experiencing before?

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@lisalucier

Hi, @caklady – thanks for sharing your experience with seeing improvements in your adhesive arachnoiditis through visiting a rheumatologist and addressing your inflammation.

I'd like to bring into this conversation others who may be interested in reading about and discussing your experience, like @mdmo @ursweetpam @rachelarachgirl @gerisues @rpennino @peggyella @christinasuit.

@caklady – wondering if the steroids and getting your numbers down have reduced any symptoms you were experiencing before?

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I don't know where to start. It has done many things for me. I got diagnosed with AA in 2010. I was given Opiods and over time I started having other problems. I couldn't even take a shower without sitting down. My heart would race and my hair fell out and came back looking like lupus hair. Test for Lupus and RA were negative. I didn't have any eye lashes. I was put on Thyroid medication. My inflammation markers were very high and kept climbing. Then overtime I was diagnosed with leaky gut, anemia and Raynards syndrome. When I got diagnosed with low thyroid my iron was fine. These things happen over time.

The treatment from the Rheumatologist has stopped the progression of the autoimmune symptoms. It had attacked my facets in my lower back and I couldn't even go to the grocery store. The pressure going down my lower back was unbearable. I can just say that I wished I would have went to the Rheumatologist along time ago. I have so many broken blood vessels on my legs and purple toes. I am posting this because I hope that someone can learn from my experience and go get help for their inflammation. I no longer take the strong pain medication. I told my neurologist…don't need to take them anymore!

My Erythrocyte Sedimentation Rate was 56 mm/hr and my he-CPR was a 36.0 mg/L. The last he-CPR test I had was 8.0mg/L. It hadn't been below a 22.0 mg/L in 6 years. I hope this will help someone else not wait so long to get help.

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Yes, I live in East TN and a spine surgeon caused me to have arachnoiditis and cauda equina syndrome seven years ago. I have been to many doctors who all covered up the problem. I am prescribed high doses of pain medication, but it has no effect on the sacral/anal pain that has destroyed my life. Are there really any doctors that treat these problems?

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@galady

Crazy name, huh? Pain is nothing to laugh at. Where nerves cluster and causes pain that will make me crazy. No cure, just control pain. No doctors specialize, it is relatively rare. Caused by multiple surgeries, multiple injections, which ìve had every one. I'm hardly able to walk, the pain is so great. I'm housebound in a recliner. Have to have help with everything. Wheelchair if I have to leave my chair. Anybody else have this ?

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I don't understand why more research isn't being done for this terrible disease.

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Have you Goggled… practical pain management arachnoiditis? It has part 1 and part 2. It was written by Dr. Forest Tennant. This is very informative and has his recommend treatment plan.

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@lisalucier

@galady – are you looking for suggestions across the United States for a doctor adhesive arachnoiditis treatment?

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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"

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@caklady

I have AA and a rheumatologist helped me. I have a doctor friend that has Arachnoiditis tell me that if I don’t get my inflammation under control I will never get relief. I went to a rheumatologist. My numbers were so bad I was put on steroids for two weeks. I was given Plauqenil and calcium channel blockers. My numbers went down for the first time in years. If you don’t get the inflammation down it will cause you a lot more problems. I wish someone would have told me this years ago. This is what helped me the most.

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"ADHESIVE" ARACHNOIDITIS IS A LOT OF NERVE DAMAGE, SCARING. PAIN THAT NEVER GOES AWAY. I WISH YOU THE BEST!!

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@jelizabeth

I don't understand why more research isn't being done for this terrible disease.

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HELLO, I ALSO HAVE AA.. RESEARCH??????????!!!!!!!!!!!!!!!!!! THE SURGEONS CAUSED THIS THEIR PROCEDURES THAT MAKES THE PAIN WORSE. HIPPOCRATIC OATH IS NOT PART OF THEIR VOCABULARY. ANOTHER DOCTOR GAVE ME FUSION WHICH HE SOULD HAVE NEVER DONE. I LISTENED TO HIM OUT OF DESPERATION. SURGERY FAILED I CALLED HIM FOR HELP, NEVER CALLED ME BACK OF COURSE.

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I just signed up here about an hour ago never expecting the number of AA sufferers I would meet! I was diagnosed with AA in 2012 by Dr. Antonio Aldrete, the well-known specialist and author who, unfortunately has now retired and moved overseas. A wonderful, kind, and totally knowledgeable specialist is Dr. Forest Tennant, in California. I see someone else mentioned him too. He retired last year but continues to provide incomparable information and HOPE through a couple of different websites and, if you get on his mailing list, there will be regular updates. He is now focusing mainly on research about AA, but is disseminating all the information, free of charge, to patients across the world. You can also look him up online. I had a wonderful Physiatrist MD who moved to Maine, so I lost her. But she TOO, had AA, and was totally understanding (on a personal level) of the horrors we experience; her practice was much about AA. She treated me for about 3 years and I was heartbroken when she left….her effective mantra is to REDUCE INTERNAL INFLAMMATION via better nutrition. It was like a miracle for me. If anyone wants to hear what I learned through her, just let me know. If anyone is in Maine, you can look her up too…. But am afraid AA is now progressing so that I need more help than what works with the anti-inflammatory routine.

Has anyone found a physician at Mayo Clinic who knows about this condition and is willing to see new patients? I´m so glad to have found you all via Connect today. Be strong. And Patient. Remember you are Not Alone….and know what it all feels like. Hugs, Joan

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I am sad to hear of your husband's problems. Does he have any issues with seizures and/or memory loss.
I had a laminectomy and shortly thereafter began having seizures and sever memory loss. Of course the physicians I have consulsulted are protecting their colleague.

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@joanmahon

I just signed up here about an hour ago never expecting the number of AA sufferers I would meet! I was diagnosed with AA in 2012 by Dr. Antonio Aldrete, the well-known specialist and author who, unfortunately has now retired and moved overseas. A wonderful, kind, and totally knowledgeable specialist is Dr. Forest Tennant, in California. I see someone else mentioned him too. He retired last year but continues to provide incomparable information and HOPE through a couple of different websites and, if you get on his mailing list, there will be regular updates. He is now focusing mainly on research about AA, but is disseminating all the information, free of charge, to patients across the world. You can also look him up online. I had a wonderful Physiatrist MD who moved to Maine, so I lost her. But she TOO, had AA, and was totally understanding (on a personal level) of the horrors we experience; her practice was much about AA. She treated me for about 3 years and I was heartbroken when she left….her effective mantra is to REDUCE INTERNAL INFLAMMATION via better nutrition. It was like a miracle for me. If anyone wants to hear what I learned through her, just let me know. If anyone is in Maine, you can look her up too…. But am afraid AA is now progressing so that I need more help than what works with the anti-inflammatory routine.

Has anyone found a physician at Mayo Clinic who knows about this condition and is willing to see new patients? I´m so glad to have found you all via Connect today. Be strong. And Patient. Remember you are Not Alone….and know what it all feels like. Hugs, Joan

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Hello, @joanmahon – welcome to Mayo Clinic Connect. Hopefully you are glad to meet so many fellow adhesive arachnoiditis (AA) sufferers here. I'm sorry to hear your AA specialist moved overseas and then you lost your physiatrist, too.

If you use this link http://mayocl.in/1mtmR63, you can contact appointment specialists online or by phone to talk to them about being seen at Mayo Clinic for your AA.

Will you talk more about what you learned about reducing internal inflammation through better nutrition?

REPLY
@joanmahon

I just signed up here about an hour ago never expecting the number of AA sufferers I would meet! I was diagnosed with AA in 2012 by Dr. Antonio Aldrete, the well-known specialist and author who, unfortunately has now retired and moved overseas. A wonderful, kind, and totally knowledgeable specialist is Dr. Forest Tennant, in California. I see someone else mentioned him too. He retired last year but continues to provide incomparable information and HOPE through a couple of different websites and, if you get on his mailing list, there will be regular updates. He is now focusing mainly on research about AA, but is disseminating all the information, free of charge, to patients across the world. You can also look him up online. I had a wonderful Physiatrist MD who moved to Maine, so I lost her. But she TOO, had AA, and was totally understanding (on a personal level) of the horrors we experience; her practice was much about AA. She treated me for about 3 years and I was heartbroken when she left….her effective mantra is to REDUCE INTERNAL INFLAMMATION via better nutrition. It was like a miracle for me. If anyone wants to hear what I learned through her, just let me know. If anyone is in Maine, you can look her up too…. But am afraid AA is now progressing so that I need more help than what works with the anti-inflammatory routine.

Has anyone found a physician at Mayo Clinic who knows about this condition and is willing to see new patients? I´m so glad to have found you all via Connect today. Be strong. And Patient. Remember you are Not Alone….and know what it all feels like. Hugs, Joan

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MY AA IS PROGRESSING ALSO. I HAVE ALSO BEEN IN TOUCH WITH DR. TENNANT. I ASKED HIM ABOUT REMOVING THE SCAR TISSUE THAT IS STUCK TO THE NERVES. HE EXPLAINED AND SAID NO! WELL I WAS AT A POINT WHERE I FELT SO DESPERATE, DEEP DOWN I KNEW NO MORE SURGERIES, NO MORE PROCEDURES. TIRED OF MY NERVES JUMPING, SPILLING THINGS NO CONTROL OF THOSE NERVES. I WENT AHEAD ANYWAY. 2 HR. TRIP TO THE HOSPITAL. IN THE CAR I WAS SO NERVOUS SAYING TO MY HUSBAND I HAVE A BAD FEELING. I WAS COXED BY OTHERS BUT IT WAS MY DECISION. THE 1ST PROCEDURE IT KINDA WORKED NERVES SEEM TO STOP. 2ND PROCEDURE HE DID MORE. OF COURSE IT WAS WORSE! COMMON SENSE I TOTALLY IGNORED. I NEVER TOLD DR. TENNANT TOO EMBARRASSED. NERVE PAIN WORSE. TOES, NEUROPATHY. I HOPE I HELPED A LITTLE BIT? KEEP THE PAIN AND EMOTIONS AWAY WHEN MAKING DECISIONS. WHEN YOU ALREADY KNOW THE CONSEQUENCES .

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@kimspr3

MY AA IS PROGRESSING ALSO. I HAVE ALSO BEEN IN TOUCH WITH DR. TENNANT. I ASKED HIM ABOUT REMOVING THE SCAR TISSUE THAT IS STUCK TO THE NERVES. HE EXPLAINED AND SAID NO! WELL I WAS AT A POINT WHERE I FELT SO DESPERATE, DEEP DOWN I KNEW NO MORE SURGERIES, NO MORE PROCEDURES. TIRED OF MY NERVES JUMPING, SPILLING THINGS NO CONTROL OF THOSE NERVES. I WENT AHEAD ANYWAY. 2 HR. TRIP TO THE HOSPITAL. IN THE CAR I WAS SO NERVOUS SAYING TO MY HUSBAND I HAVE A BAD FEELING. I WAS COXED BY OTHERS BUT IT WAS MY DECISION. THE 1ST PROCEDURE IT KINDA WORKED NERVES SEEM TO STOP. 2ND PROCEDURE HE DID MORE. OF COURSE IT WAS WORSE! COMMON SENSE I TOTALLY IGNORED. I NEVER TOLD DR. TENNANT TOO EMBARRASSED. NERVE PAIN WORSE. TOES, NEUROPATHY. I HOPE I HELPED A LITTLE BIT? KEEP THE PAIN AND EMOTIONS AWAY WHEN MAKING DECISIONS. WHEN YOU ALREADY KNOW THE CONSEQUENCES .

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Hi There, I am so sorry to hear of your desperate attempt to improve the nerve scarring. Believe me, most of us know what you mean. There are times I´ve screamed, "cut my legs off, cut them off!" And this when my pain protocol is taking a break and nothing works. But truly, attempting more surgeries is the worst thing one can do. When pain started really bad and I saw a kindly older physician, he grabbed me by the hand and said, "young lady (HA! I was 70 Plus), PROMISE ME, you will not let anyone touch your spine: you will wind up in a wheelchair." And he did it with such force and earnestness that it stayed. Plus Dr. Aldrete´s five-hour consult with me back in 2012 generated a 15 page report saying exactly the same thing: do not let them operate ever again. So we all have to learn that awful lesson, just don´t beat yourself up. And if these words here can help anyone else, we will have done our job. Too often it is next to impossible to find anyone with whom one can TALK! This is truly the beauty of Mayo Connect. A way to help each other out. I have not tried to make an appointment with Mayo about AA, so not sure what their experiences are, but will probably need a consult soon. Don´t be too embarrassed to confess to Dr. Tennant. He is the kindest and most knowledgeable professional in AA, and he´s seen it all. Take care, Joan

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@lisalucier

Hello, @joanmahon – welcome to Mayo Clinic Connect. Hopefully you are glad to meet so many fellow adhesive arachnoiditis (AA) sufferers here. I'm sorry to hear your AA specialist moved overseas and then you lost your physiatrist, too.

If you use this link http://mayocl.in/1mtmR63, you can contact appointment specialists online or by phone to talk to them about being seen at Mayo Clinic for your AA.

Will you talk more about what you learned about reducing internal inflammation through better nutrition?

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Hi Lisa, took me a while to figure out how to reply to you, and now I have to keep my husband company for a little bit. But will be back. Thanks so much for your note. I will definitely tell you about the internal inflammation efforts….Big hug and great to meet you and all others, Joan

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