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

Hi Jeanne, my name is Cindy and I live in Va. I had a Lumbar Arachnoid Mass removed from inside my thecal sac in 2010. The mass was missed by the Radiologist in 2008. They found it when I had Myelogram in 2010 which showed a complete block. Since then I suffer from Adhesive Arachnoiditis due to my nerves being permantly fused together. I also am having difficulty getting the treatment needed to control the debilitating pain that comes with this terrible disease which has now progressed to severe bladder issues. The opioid addiction/ overdoses issue has definitely affected patients with these debilitating diseases and the ability to be able to get the medicines needed to control our painl. I recently lost my doctor and whom I also consider a friend due to him being arrested by the DEA claiming he was over prescribing pain medications. I can't speak for the other patients, however; I do know everyone is outraged over his arrest. If it was not for my Doctor I would have been confined to my bed/ couch for the last 7 years and possibly may have ended my life due to the terrible pain that I endured and although I still lived with pain on a daily basis he made it possible to still be able to live my life and not be a prisoner of my home. He had just received his license to prescribe medical Marijuana and we were excited to give it a shot in hopes of eventually being narcotic free. He is a very hardworking, compassionate, and caring man who worked 7 days a week to treat sick ppl including those who had no medical insurance and could not afford treatment only charging them $20 a visit. It is my opinion that we need more doctors like him. I am not denying that Opioid Addiction is rampant in this country however so is debilitating disease and Injurys that require these medications for treatment. If Doctors are allowed to do their jobs and follow the guidelines with proper diagnosis, education of medication use and doing the testing required by law to make sure their patients are taking their medications properly then I believe we will see improvement regarding this very serious issue. My doctor has hearing on Jan 18th pls say a prayer for this amazing man. I pray all charges are dropped and he can get back to doing what he excels at....caring for human beings. If anyone can provide me with any doctors that specialize in Adhesive Arachnoiditis I would greatly appreciate it. Thank you and God bless you all! CINDY MAY

I hate these bladder issues. Can anything be done for that? As if we don't have enough issues.

Happening all over. All doctors are scared to death, thus just give us tylenol! Ha, what a laugh! I guess if you cut your arm off, it would still be tylenol.