Arachnoiditis: Trying to find a specialist

When you go in to see a new doctor explain your entire situation including exactly what you've written above along with how it has affected you. Tell them that you are looking for a doctor that is willing to work with you because you are desperate for help. I have made appts. with several doctors at the same time (after my deductible was met) and told them I was going to see a few other doctors and was basically interviewing them. I explained that I no longer want to be strung along or looked down upon and then asked if they were willing to help me. I know it's hard to take on any more stress on top of just trying to survive the symptoms every day but remember, you are your best advocate. You will never get anywhere in the medical world unless you push.

I have never sued anyone in my life but I think you have a few really good lawsuits on your hands. You may want to talk to a malpractice lawyer. Also, if I were you I would also contact the Commissioner of Insurance in your state and file a few complaints against the doctors. I'm considering doing the same things. You may want to contact Nicolas Argy I mentioned in the last response. He is a radiologist and a medical malpractice lawyer. He has a few other titles under his belt at well. He may be able to steer you in the right direction or at least a little advice. Google patient advocate in your area as well. You have to pay them but they really dig into your records, make phone calls, and get things done for you.

Thanks for the information.

Unfortunately, Dr. Tennant has retired.

Hello Theodore, I also suggest contacting Forest Tennant, Calif. He started the Arachnoiditis Foundation. I hear you!! I understand!! I have Adhesive Arachnoiditis. I live in NJ. Wish I could help you. Only my experience, majority of P.M. have never heard of it or pretend don't know about it. I have a Pain Pump with 3 medications in it. It helps. Try and get all you information together so if you call Tennant and he asks you for it you will have it ready. My dr. put me on LDN not an opiate. LDN is hard to explain so if you look it up will explain in detail. Good luck to you and please let us know how you are doing.

I lost touch with members who have this disease.

Hi @kimspr, discussions about arachnoiditis can be found in the Spine Health group https://connect.mayoclinic.org/group/spine-health/

I moved your message to this existing discussion where you were connected with others already, like @jelizabeth, @qball2019 @carolinapearl53 @danispiderspine and more. You may also be interested in these discussions:
- Arachnoiditis https://connect.mayoclinic.org/discussion/arachnoiditis/
- Arachnoid Cyst https://connect.mayoclinic.org/discussion/arachnoid-cyst/

I'd also like to welcome new member @kacie. Kacie, what is your experience with arachnoiditis?

Hi Margaret, I am an arachnoiditis patient, diagnosed with proper MRI´s in 2010. Started when surgeons used Pantopaque for diagnosis, at a time when MRI´s did not exist (1973). I needed surgery for laminectomy and fusion. I trust this diagnosis provided in 2010 because it came from Dr. Antonio Aldrete, who wrote several books and many articles about Arachnoiditis. He has since retired, however, and is no longer available for consult (I believe he has retired to Argentina). Have been fortunate to see Dr. Forest Tennant in 2017, but he closed his practice at the beginning of 2018. All I´ve ever wanted was to have is a way to "keep going," and have tried all sorts of land and water therapy, as well as various pain relief modalities, as instructed by Dr. Aldrete. Now am stuck on hydrocodone for the past several years...and feeling the effects. Now having trouble walking and driving, and can´t get to water therapy 20 miles from home. Feel as if I must start accepting an end. But not ready....until I manage to get to Mayo, Neurology in Jacksonville. Have appointment for mid August. This is a long reply, but one that may give some hope. I have lived with ARC and AA (adhesive arachnoiditis) since probably 1973, when it all began. Very important to get good diagnosis to be sure a person is dealing with this, and then try to read all you can about it. There is loads of information, especially the websites from Dr. Tennant. In my next note will give everyone those websites. Meantime, please do read up Practical Pain Management website, and search for "Arachnoiditis" once in. Search for Arachnoiditis everywhere you can, INCLUDING You-Tube. Knowledge is power. Especially at a time when most physicians know little about this condition listed in the National Organization of Rare Disorders (NORD). Self-education is the key now. Please forgive the length of this one!

Please pursue the Disability issue. I am almost sure I saw something online about it now being approved for Disability. May need an attorney, and I´ve talked to a couple already. I am too late myself since I stopped working several years ago because of the pain, etc. Don´t give up on Disability. Online research is your best tool.

You mention 2 great doctors, may I add, The Burton Report, There is another informative web site, Arachnoiditis a quiet web of suffering. find them also on Facebook. Within their pages we can offer information on Aracachnoiditis, Adhesive Arachnoiditis which is worse, do's and dont's when thinking about therapy, aqua therapy, exercise or miracle cures. PT, Aqua Therapy, Stretching, I did it all because dr's thought it would help but it caused more pain. They were not to familiar with AA.I trusted them. I have A.A./BJA: British Journal of Anesthesia, Chronic Adhesive Arachnoiditis. Very informative. Joan you are so right when you say research.

Yes, indeed, the Burton Report (found online) is excellent.....There are several Facebook groups but I don´t deal with Facebook...takes too much time. There are also several blogs, but after a while I was getting a little depressed reading. Mayo Connect is different. I do believe totally in water therapy as the best way to keep leg muscles supple and working hard, but in a true Therapy Pool of around 94 degree water. The one I´ve used and loved is with Sarasota Memorial Hospital...can´t manage it right now because of the distance from home. PT can be risky, they don´t always know what to do about Arachnoiditis needs....most of the times they are amazed to hear about this condition...depending on their level of interest, I do bring them reading material to get started on learning about it. Did the same with my GP, and she now has included AA in my Patient Portal records, after several years of bringing her Dr. TEnnant´s materials. So am very grateful to her for being receptive to his protocols. While Dr. Tennant is officially retired (no more patients), his Foundation continues to update several websites for newest research protocols and if I email him he does reply and is very kind to do so. Latest protocol just came out a month ago. Has loads of practical information on line. Everyone should go online and look at his recommendations.... Most physicians who "see" ARC are actually radiologists or even anesthesiologists. Have a good weekend and week......my best! Joan