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

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