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Oct 28, 2017 · I am desperate to find a dr who treats arachnoiditis. in Brain & Nervous System

Hello all. I am sorry that AA pain makes us part of a group. I can only offer some information about possible AA and/or pain specialists about whom you may wish to do some research. My husband has Adhesive Arachnoiditis from an epidural steroid injection between his C4 and C5 vertebrae that was poorly done. Woke up that next morning sobbing and curled in a fetal position from which he could not move. That was 2003 (I got the years incorrect in another post here) and he was eventually diagnosed with AA. Our pain clinic is terrible and his current med regimen is insufficient for this type of Intractable Pain. Not Chronic Pain, Intractable Pain. A major difference.

Anyway…there is a pain specialist just outside of Washington DC, who operates an integrative pain clinic. His name is Dr. Gary Kaplan, and he has also written a book, entitled “Total Recovery.” He uses some of the same protocol that Dr. Forrest Tennent does. No doubt, if you have searched for AA, you have come across Dr. Tennent’s site. He has some good free downloads on surviving intractable pain and protocol for diagnosis and testing and treatment with which you can educate you pain doc if he or she is interested. Dr. Tennent is in California and still takes new patients.

We are awaiting a time when my husband finishes his last year on a particular job and then we are going to try something different. Kaplan Center or Dr. Tennent or both. FaceBook has a couple of great groups. I follow Arachnoiditis Everyday on there. Good information and great support and caring members. Most research I have done come to a dead-end, mostly because the pain management docs are looking to do surgery. My husband has had no surgery, which makes him even more rare of an AA victim. Probably also makes him in better condition than many and for that we are grateful. His current doc will not prescribe stronger dosage of Exalgo ER, nor a breakthrough med and neither will he recommend a stim implant while my husband still has his job.

In Maryland we now have medical marijuana pharmacies opening up, but the pain clinics in our locale will drop a patient if they secure a script for medical pot. I had thought that they would work with the pharmacy to help their CP and IP pain patients lessen their use of opioids and/or use it for breakthrough pain, but no. What is the point of the state licensing medical marijuana pharmacies if they cannot be used.

Best of luck to you all.

-Jeanne

Oct 28, 2017 · Any Adhesive Arachnoiditis members here? in Brain & Nervous System

Hi Colleen.

Thank you for replying. When he finally got an appointment in the pain management clinic, the “nurse” told him that his records had been reviewed by the doctor and handed him a script for Percocet, which was the standard for all their new patients. He had the option of saying NO, only because he had an emergency stash of the opioids, which had successfully treated his pain for so many years, Hydromorphone. All PCPs who are associated with local hospitals and that is the vast majority here, no longer will prescribe medicines for severe pain. After some experimentation, he is taking Exalgo ER and Horizant ER on occasion. They will not provide breakthrough medication nor alter his dosage of Exalgo ER to help him prevent breakthrough pain. The patients are treated as addicts or sellers until proven not to be by monthly urine tests for 19 drugs. Although, this has lessened in the past few months because I think the insurance companies started to balk at the incredible costs for such testing. Right now we are just stuck in this clinic, but when this last year of his job is done, we will try to find something else.

We were excited that our area just opened up a medical marijuana pharmacy, but the pain clinics will not keep on any patient who secures a script. I had thought that in an effort to help chronic and intractable pain patients lessen their opioid use and/or ease their breakthrough pain, the pain clinics would work with the alternative pharmacy, which has been licensed by the state. Guess not.

Thanks for the introductions. I follow a group on Facebook, which offers a broader range of contacts. I have searched repeatedly for specialists, but most are no longer in practice. There is Dr. Forrest Tennent in California, who specializes in AA. Dr. Gary of the Kaplan Center just outside of Washington DC also works with pain patients and uses some of the same protocol that Dr. Tennent does. That will probably be what we end up doing in the future. Yet, these physicians are considered alternative quacks by most main stream pain specialists that operate within the major hospital systems.

All in all, he is in much better shape than most other AA victims and we are grateful for that. Just angry that people with legitimate chronic and intractable pain have to be denied proper pain relief, while being treated abysmally, because of the “opioid crisis” caused by those who choose to illegally use and sell opioids. And..angry that this rare disorder is ignored by most pain doctors and medical schools and treated not as intractable pain, but as chronic pain or less.

Again, thank you, Colleen. And..thanks for letting me vent a bit, too.

-Jeanne

Oct 25, 2017 · Any Adhesive Arachnoiditis members here? in Brain & Nervous System

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