Yesterday, I mentioned that I didn’t want to get into all of the reasons why I don’t want to be a patient at the Johns Hopkins Pain Treatment Program (PTP). Today, I’m getting into it.
I talked to my shrink about it and my shrink basically said, fuck no, don’t do that program.
The PTP starts with two weeks minimum of an inpatient clinic, followed by two weeks minimum of the day treatment program.
The inpatient clinic is in the psychiatric ward at Johns Hopkins. Inpatient, whether it’s for physical illness or mental health, makes me hysterically anxious because I feel trapped and feel like I have no control over anything. I’ve checked myself out of inpatient Against Medical Advice twice in the past, due to freaking out so bad. The most recent time, I couldn’t walk at the time from physical illness (viral arthritis), but wanted to get out so bad that I didn’t care how badly I was doing.
The inpatient clinic is followed by the day treatment program, which lasts for two weeks minimum and takes place in downtown Baltimore. Hopkins doesn’t cover housing or housing expenses, but requires you to be there, attending the program, Monday through Friday from 8am-4pm. My insurance, Medicaid, doesn’t cover housing for any purpose.
The PTP takes patients off all of their meds — in particular, anything you use for pain management (and I’m not on anything except occasional Flexeril, which isn’t an opiate, it’s a muscle relaxant). Then the PTP puts you on antidepressants and antipsychotics, which I’m already on, but the PTP puts you on really high dosages of these medications. My psychiatrist says I don’t need higher levels and that higher doses would make me worse because of the side effects.
Additionally, the PTP doesn’t wait to get insurance authorization (a guarantee that the insurance will pay for it) to admit patients, to start doing tests, or to provide treatment. The PTP starts the authorization process after they start doing things, which means that if the insurance doesn’t cover it, patients are responsible for the entire bill.
My psychiatrist said (paraphrasing) that the PTP is boutique “treatment” for rich people; a money making scam; and that it’s pathologizing physical pain and turning it entirely into a mental health issue. I agree with all of that. The PTP seems to be little more than a detoxification program for pain meds — one that’s partially funded by psychiatric drug companies.
Back in the early 1990s, the founder of the PTP was a private consultant to the U.S. Department of Veterans Affairs’ Gulf War Syndrome (GWS) treatment program. He helped set that program up; it was modeled after the Hopkins’ PTP. This was back when the U.S. government and the VA still treated folks with GWS as crazies and malingerers. The PTP still treats its patients like it’s all in their head, like pain psychology and mindful techniques will resolve chronic pain. And, not surprisingly, the founder has an MBA, which he got after his PhD.
That’s the simplified version of why I won’t be doing the PTP.
Some folks have been asking me if I have any other options for treatment. There are some excellent programs elsewhere in the USA (such as Ainsworth in New York) that provide treatment, but the out-of-pocket costs are as great, if not greater, than the clinics near me that treat pudendal neuralgia. The clinics near me won’t take me as a patient, essentially because I am poor:
- Dellon Institutes for Peripheral Nerve Surgery and The Centers for Vulvovaginal Disorders accept no insurance; and
- Center for Pelvic Pain accepts insurance, but not Medicaid, and refuses to accept Medicaid when Medicaid authorized out-of-network treatment for me — plus, the folks at this clinic wouldn’t even give me an estimate for how much out-of-pocket treatment would cost.
Pudendal neuralgia is apparently a rich people’s affliction because only the rich can afford the treatments. As there is a small success rate with all the various treatments (around 50% or less, on average), most providers are overly cautious about treating it. There’s that whole “we don’t want to make it worse and we don’t want you to sue us because nothing got better” thing. Because rich people and suing. Plus, the low success rates means not a lot of payoff in terms of providers feeling they helped, too, so they just tend to stay away from it.
I feel like a lot of the providers out there who do treat pudendal neuralgia, regardless of their location (USA or not), and regardless of the treatments they provide, are just sort of… snake oil peddlers. Treatment is really a “we’ll try this, but the likelihood of it working is flipping a coin type of odds,” and I feel like anyone willing to take money from people (or insurance) when there’s that kind of low odds of success is in it for the fucking rich people money and not because they actually want to help. There was a doctor at Hopkins who specializes in pudendal neuralgia and he left Hopkins to open a private practice that accepts NO insurance, not even Medicare. I’m looking at you, Dr. Dellon.
One person specifically asked me if I could go outside the USA for treatment for pudendal neuralgia, as I can’t seem to get it here. The answer to that is maybe, eventually. There are a few places in the world who have providers treating pudendal neuralgia (Australia, Austria, Belgium, France, Spain, Switzerland, Turkey, United Kingdom, but those don’t help me because I can’t get on their national insurance plans and the out-of-pocket costs might be worse than here, especially after the exchange rate. I’ve looked into buying health insurance in the countries where there are other providers, but because the pudendal neuralgia counts as a pre-existing condition, there’s a waiting period of 12+ months before I can get treatment. And when do visitor visas from the USA expire? Far less than a year (though Australia’s 600 visa allows 365 days, that still wouldn’t be enough time, and I no longer qualify for Australia’s 457 visa, which is for up to four years).
All I can do now is wait. I’m going to keep checking on providers overseas for when one pops up that I would be able to feasibly get treatment from, but for the time being there are no options.
I don’t want your thoughts and prayers and vibes. I want solutions, and in the absence of those, I want your empathic anger. Because, jfc, this having a disabling condition that can only get treated (in the USA) if you’re rich is fucked up. It just is.