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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

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Aug 4, 2023
In reply to @adhesivearachnoiditishelp "long history of several medical issues but finally have dx of adhesive arachnoiditis, confirmed by MRI...." + (show)
@adhesivearachnoiditishelp

long history of several medical issues but finally have dx of adhesive arachnoiditis, confirmed by MRI.

Looking for any information regarding this.

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@adhesivearachnoiditishelp. Hello and welcome to Connect. You should find other members with this diagnosis in these discussions on Adhesive Arachnoiditis.

Spine Health - "Any Adhesive Arachnoiditis Members Here?"
https://connect.mayoclinic.org/discussion/any-adhesive-arachnoiditis-members-here/
Spine Health "Adhesive Arachnoiditis looking to Talk to Others"
https://connect.mayoclinic.org/discussion/arachnoiditis/

REPLY
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Aug 7, 2023

Hi @adhesivearachnoiditishelp. I moved your discussion and combined it with an existing discussion that @jenniferhunter mentioned, titled:

- Any adhesive arachnoiditis members here?
https://connect.mayoclinic.org/discussion/any-adhesive-arachnoiditis-members-here
I did this so you could meet members like @the4curtins, @kgrainger and many others who have discussed adhesive arachnoiditis. @adhesivearachnoiditishelp, you mentioned you finally got a diagnosis, how are currently doing with your diagnosis and what do you hope to learn from others in this discussion?

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1 reply
kgrainger | @kgrainger | Aug 7, 2023
In reply to @JustinMcClanahan "Hi @adhesivearachnoiditishelp. I moved your discussion and combined it with an existing discussion that @jenniferhunter mentioned,..." + (show)
@JustinMcClanahan

Hi @adhesivearachnoiditishelp. I moved your discussion and combined it with an existing discussion that @jenniferhunter mentioned, titled:

- Any adhesive arachnoiditis members here?
https://connect.mayoclinic.org/discussion/any-adhesive-arachnoiditis-members-here
I did this so you could meet members like @the4curtins, @kgrainger and many others who have discussed adhesive arachnoiditis. @adhesivearachnoiditishelp, you mentioned you finally got a diagnosis, how are currently doing with your diagnosis and what do you hope to learn from others in this discussion?

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I am totally confused and hoping to speak with others about it

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witwicki | @witwicki | Jan 18 12:45pm
In reply to @joanmahon "I just signed up here about an hour ago never expecting the number of AA sufferers..." + (show)
@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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Good afternoon. I was looking through comments and came across yours. I live in Maine and have a friend with A piece of arachnoiditis and is looking for someone who understands it. He is aGood afternoon. I was looking through comments and came across yours. I live in Maine and have a friend with An piece of arachnoiditis and is looking for someone who understands it. He is a retired ER nurse who is very well versed in Dr. tenants studies and protocols. I was wondering if I could ask you the name of the psychiatrist that moved to Maine

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1 reply
cgreenle | @cgreenle | Dec 3 3:17pm
In reply to @lisalucier "Hi, @caklady - thanks for sharing your experience with seeing improvements in your adhesive arachnoiditis through..." + (show)
@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 too am interested in the inflammation aspect. I also have scoliosis, so a lot going on.

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bolake | @bolake | Dec 4 2:22pm

I found out I had it after MRI this past July at L4L5 level . Never had surgery in my Lumbar area just steroid injections which I have learned can also cause it. Neurosurgeon said surgery would make it worst because of creating scar tissue. He referred me to a pain specialist and therapy. Pain specialist said therapy or spine stimulator implant are the options. I have been doing the therapy which has keep it at bay so far, still have the lower back and leg pain but have been managing. Don't want to do the implant unless I absolutely have to.

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cgreenle | @cgreenle | Dec 4 6:51pm
In reply to @witwicki "Good afternoon. I was looking through comments and came across yours. I live in Maine and..." + (show)
@witwicki

Good afternoon. I was looking through comments and came across yours. I live in Maine and have a friend with A piece of arachnoiditis and is looking for someone who understands it. He is aGood afternoon. I was looking through comments and came across yours. I live in Maine and have a friend with An piece of arachnoiditis and is looking for someone who understands it. He is a retired ER nurse who is very well versed in Dr. tenants studies and protocols. I was wondering if I could ask you the name of the psychiatrist that moved to Maine

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I too live in Maine (surgery was done in Connecticut in ‘72).
If any of you have found help for any aspect of our condition I would appreciate your sharing.

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