1. < Spine Health

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

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

kimspr3 | @kimspr3 | Aug 8, 2019

I don't know if you still belong to this site. I am also a member. I also have AA, caused by Spins Surgeons, Neurosurgeons, Procedures. I found out sadly the hard way by not asking questions and researching. The doors are closed to us. Is it because the Medical Community is so powerful? May I asked how are you doing now? Did you find anyone to give you relief from the pain?

REPLY
1 reply
kimspr3 | @kimspr3 | Aug 8, 2019
In reply to @joanmahon "Dear Lisa, I´m not sure if I let you know that I followed your advice and..." + (show)
@joanmahon

Dear Lisa, I´m not sure if I let you know that I followed your advice and checked with Mayo Neurology in Jacksonville again and was given an Appointment for August 14. Am awaiting the packet of information. So hopefully am on my way--anyway. I worry because of the two conditions (Adhesive Arachnoiditis diagnosed in 2012) and Normal Pressure Hydrocephalus, tentatively diagnosed in May. Only a Lumbar Puncture can confirm NPH, but this is "counter-indicated" with AA. So can only hope and pray Mayo will steer me in the right path. I will do anything they suggest. I live in Sarasota, a 4 hour drive from Mayo Jacksonville, and have two little dogs to leave behind, which breaks our hearts.

Jennifer Hunter, you were amazing, and I am so grateful to your encouragement. I think I owe you a longer thank you, though. My fears stem not so much from surgery but from the "counterindication" of both conditions, and I don´t worry about a shunt if that´s all that can be done. I just worry a little about leaving my husband, who is already dealing with my idiosyncratic behaviors and am sure wishes this entire thing was resolved.

John, as for diminished cognitive functions, it is very, very rough. I barely have two or three hours max in which I am functioning--can´t follow recipes, can´t do much cooking, can´t plan for the day from the moment I drag myself out of bed. The worst is not being able to make lists, or even write, although I must say I can type better than write by hand. My train of thought disappears on me when on the phone, word-finding is a hoot, and everyone has to just tap their fingers waiting for me to come up with the right descriptive word. I´ve been a relatively high-functioning geriatric social worker for many years, with a huge bilingual caseload. I had to retire in 2013 because I feared messing my clients´ lives up. And I miss this part of my life terribly. So, John, I don´t do well with the loss of cognitive functions. I don´t read the newspaper anymore, or read anything at all. I watch the news and stew and get angry at our nation´s situation. So that´s not so good, either.

Don´t want to bother you anymore with this, but since you asked 🙂 :)......It´s just not a life. Even if I have the shunt put in I don´t have high hopes because of the AA....but I do want to be able to WALK outside again! And it appears that certain symptoms will be helped and others not.

Hey, you all, have a good Sunday. And Lisa and John, thank you so much for your support these past few days. You´ve certainly given me hope. Now if I could just figure out how exactly Mayo Connect works so that I can get replies to all who have written. Big hug to all,
Joan

Jump to this post

Hello, I just came across your message. I also have AA. Very hard to accept because of the reason I and all of us a-quired it. Did you get the information and care you needed? I sincerely hope so. I wish the was research on AA to help that pain, walking, bending, standing and so more. Hope you had good luck!

REPLY
carolinapearl | @carolinapearl53 | Aug 20, 2019
In reply to @kimspr3 "I don't know if you still belong to this site. I am also a member. I..." + (show)
@kimspr3

I don't know if you still belong to this site. I am also a member. I also have AA, caused by Spins Surgeons, Neurosurgeons, Procedures. I found out sadly the hard way by not asking questions and researching. The doors are closed to us. Is it because the Medical Community is so powerful? May I asked how are you doing now? Did you find anyone to give you relief from the pain?

Jump to this post

Hi..I have found a wonderful doctor. He is a pain management doctor, and I have to say he is very special to me. I had tried several doctors in Beaufort SC, but this doctor is the only one that has helped me get rid of most of the bad pain.im hoping he will be around for a whil. Thank you for contacting me. I wish you all the best. Keep in touch!

REPLY
lavera | @lavera | Feb 1, 2020
In reply to @lavera "Does anyone else suffer from this." + (show)
@lavera

Does anyone else suffer from this.

Jump to this post

In constant pain searching for help in OKC

REPLY
1 reply
lavera | @lavera | Feb 1, 2020

Does anyone else suffer from this.

REPLY
2 replies
Lisa Lucier | @lisalucier | Feb 2, 2020
In reply to @lavera "Does anyone else suffer from this." + (show)
@lavera

Does anyone else suffer from this.

Jump to this post

Hi, @lavera - welcome to Mayo Clinic Connect. Sounds like you are going through a lot of pain and suffering with your adhesive arachnoiditis. So that you can talk to others who are discussing this condition, I've moved your post here to this discussion, "Any Adhesive Arachnoiditis members here?"

Hoping that members like @jenniferhunter @carolinapearl53 @kimspr3 @joanmahon @jeannels and @johnbishop may have some input for you on managing this condition and also a strategy on how to find the right help in the Oklahoma City area.

Have you found anything thus far that helps with the pain at all, lavera?

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Feb 2, 2020
In reply to @lavera "In constant pain searching for help in OKC" + (show)
@lavera

In constant pain searching for help in OKC

Jump to this post

Hi, @lavera – I would like to add my welcome to Connect along with @lisalucier and other members. I don't have any experience or knowledge of adhesive arachnoiditis but I found some information that may be helpful. The first one from the Cleveland Clinic in 2018 lists a clinical trial but I'm not sure of the status. It may be worth contacting them.

Rare Pain Condition Still Exists in New Forms with New Hope for Relief
-- https://consultqd.clevelandclinic.org/rare-pain-condition-still-exists-in-new-forms-with-new-hope-for-relief/

New Treatment Gives Hope to Arachnoiditis Patients - July 09, 2016
-- https://www.painnewsnetwork.org/stories/2016/7/9/new-treatment-gives-hope-to-arachnoiditis-patients

REPLY
uonlylvonce2 | @uonlylvonce2 | Jun 7, 2021
In reply to @carolinapearl53 "Hi. My name is Dianna and I have been diagnosed with AA for about 6 years..." + (show)
@carolinapearl53

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!

Jump to this post

Who is your doctor?

REPLY
1 reply
Moderator
Amanda Roe | @amandajro | Jun 8, 2021
In reply to @uonlylvonce2 "Who is your doctor?" + (show)
@uonlylvonce2

Who is your doctor?

Jump to this post

Hello @uonlylvonce2 and welcome to Mayo Clinic Connect! I can see you are interested in hearing back from member @carolinapearl53 with regard to information on her doctor.

In the meantime, are you willing to share your personal experience with Adhesive Arachnoiditis?

REPLY
1 reply
uonlylvonce2 | @uonlylvonce2 | Jun 8, 2021
In reply to @amandajro "Hello @uonlylvonce2 and welcome to Mayo Clinic Connect! I can see you are interested in hearing..." + (show)
@amandajro

Hello @uonlylvonce2 and welcome to Mayo Clinic Connect! I can see you are interested in hearing back from member @carolinapearl53 with regard to information on her doctor.

In the meantime, are you willing to share your personal experience with Adhesive Arachnoiditis?

Jump to this post

I was actually born with spina bifida and they didn’t find it until 1999 and I was 28 yrs old. The mylemeningocele had grown down my spine from L3 to S1 and hip to hip and not across. I have had many procedures many injections and 3 surgeries for removal of mylemeningocele. The first mri recommended a pet scan and said possible arachnoiditis then. My nerves have just started to clump and I am trying my hardest to figure this out because my docs haven’t even mentioned it other than the report. I just want to do everything I can to not let this progress and find a doctor who can help me with that.

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