3 week pain clinic
Has anyone gone through the 3 week pain clinic? It was recommended for Gastroparesis. It is also $50,000. BCBS turned it down as medically unnecessary. We have filed an appeal. Just wondering if it’s worth it?
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I'm so sorry ginnyodie, and I commiserate with you. I don't have gastroparesis (well not officially, but I have a defunct small intestine 🙂 ) , and have been dealing with horrific pain for 11 years, so I understand your 'pain'.. pun intended. You know, these programs all sound good, but honestly, I don't think anything works as well as a drug to block pain.. and there is NOTHING for us GI people. We can't even do opioids b/c they make us sick (I think that is generally true). Heck, all this political anti-opioid propaganda (can you tell I have an opinion 🙂 ) has done is keep people who legitimately need pain meds from getting them. I'm a PT and a friend just had a knew replacement and NO pain meds.. NONE! She's a 70 year old lady, doesn't even drink and is about as much at risk for becoming an addict as I am going to be the next President. She is suffering horribly, and can't do her rehab as she should. It's ridiculous. Unfortunately, the medical community has now swung away from meds. If you have GI pain you are expected to just suffer, I guess.
I've done physical therapy for my abdominal wall and pelvic floor, exercise, meditation (I studied for a year with a buddhist monk), bought self- hypnosis CD's, rested, gone to the therapist.. and none of it has changed the pain one bit. IMO, something is causing the pain, and until or if that can be remedied, nothing is going to help except lying down with a heating pad. (that's what I do), which doesn't take it away, but feels better temporarily.
I pray someday there will be help for us.. and for you. I feel like that is about all there is left to do.
HOWEVER! – that said, I know it sounds a little 'woo-woo' (as I call it), but there has been some actual research to show that hypnosis (done by someone specifically trained to do this for GI tract), has been helpful for people with IBS pain (which is G(, at least). I know our minds our powerful, but I can't seem to get mine to block out pain signals no matter how much I've tried. I was going to explore this. I know there is some place out east that does this.. I can't remember.. and they have a list of therapist around the country. I'll try to look for it. In the UK there is a center that is big on the hypnosis and self hypnosis, so if you can't find a practitioner, you might be able to get something you could listen to yourself.. as a second best. There is a therapist who is trained in my city so I think I may give it a try. It would be something you could do, at least, that can't hurt. I'm pretty sure no insurance company would pay for hypnosis, unless you got a savvy therapist who knows their way around the coding system :), but I'm sure it would be a lot cheaper than 50K. It's not long term, they get you set up and then I think it's something you continue on your own.
Thanks for the links, I would be interested in hearing from anyone with a GI disorder who has been through that program. Maybe some of the folks you've tagged will chime in. Unless they have something really novel and that specifically addresses pain, I probably won't pursue it myself. i.e. biofeedback or hypnosis (which is about the only thing that has been shown to have some actual effect with IBS pain – so I'm going to extrapolate to the GI tract), which they don't do there. I might just pursue that somewhere. I haven't had the eval yet.
Ginnyodie.. Oh, this was in August, hopefully you are still here.. I was reading the threads about the pain program. All of the people had orthopedic type pain or were trying to get off of opioids.
I did see this also, which I had no idea was even possible, and certainly wasn't suggested to me!!!
" About 2 months ago my doctor asked if I would consider Medical Marijuana as a treatment for my pain as it is available in Minnesota since August. I agreed and and after a brief visit with a state-approved MD who referred me to a state approved pharmacy to decide what form and dose would be best for me. It was advised I take a 50/50 mixture of THC and HBD orally twice daily and a 100% THC SL spray for breakthrough pain which I rarely need "
I know people with some GI disorders have found marijuana to be a lifesaver, i.e. Chrohn's disease, just general GI issues. I would like to explore it, but haven't been able to b/c it's not legal in my state, even medical; so I don't have anyone to work with me on what 'dose' to take, etc, But heck, I had no idea I could go to a pharmacy in MN and have someone work with me! Might be something to consider. I'm gonna ask my Mayo Dr. about this, if he's still talking to me 😀 😀 . He'll probably say no, knowing him.
Otherwise, from what I'm reading about the pain program, I don't think it would be helpful for me.
It was diagnosed as autoimmune gastroparesis. Yes the cost they told us was between $45,000 and $50,000. That is the program and does not include any living expenses. All of the mentioned above have been useful heating pad for sure. TPN has taken some of the pain as not as much pressure to eat. Marijuana yes had been lifesaver. Illegal in our state. I though you had to live in the state to have medical card…maybe Minnesota is different. PT for pelvic floor, CBT for pain management etc
Thank you for all the responses.
I actually completed the program several years ago here in Jacksonville, Florida for Fibromyalgia which causes chronic pain among other issues and have caused me to be disabled. I found it to be very helpful and informative. The information and treatment given isn't just medical, but physical, emotional, nutritional and many other things to better improve your quality of life. Although my condition is chronic and incurable , I've been able to function without opioids and little to no pain meds during the flareups that I now suffer less of and my insurance covered my treatments.
Try it if you can get medical CBD/THC. Iowa has it and may have one near the border to your state. It works. It doesn't interfere with any of the drugs you would ordinarily take. My son is taking it for his autism but he has gastroparesis. It's works well. My son is now on Advil Dual. It's supposed to help with the belly pain better than tylenol and then advil. Plus you have to take less.
Just seeing this post today (3/6/22). I attended the Rochester 3-week Pain Rehab Clinic back in March of 2007 (I had been diagnosed with severe Fibromyalgia and been put on all sorts of medications and nothing worked except made me feel dopey and out-of-control of my own body). I was looking for a cure for Fibro, but found out there is none. The PRC was helpful and informative, but yes, VERY expensive and thankfully my insurance covered the cost. Three weeks of moteling it in Rochester was on me though. I have mixed feelings on PRC and what I got out of it. I took some of their information to use to help myself and other information I have disregarded over the years as it didn't work for me and my situation. They are very strict on eliminating ALL medications that you take upon entering PRC (even taking an aspirin is not acceptable). I did enjoy being around others who also had pain problems like I did to find out how and what had previously worked or not worked for them (people are referred to PRC by their physicians can have all sorts of various physical pain problems/conditions/diseases, not just Fibro, as what I had/have). Being able to socialize with others during those 3 weeks was helpful ('m still friends to this day with another gal who also went to PRC at the same time as I did in 2007). All of the nurses and other health professionals I encountered there were helpful, although my 'over-seeing' nurse for those 3 weeks was the most unfriendliest, unfortunately – our personalities just kind of 'clashed', I guess. Overall it was a worthwhile experience, but because of the cost (both for the program and to spend on a motel for those 3 weeks … it was a Monday through Friday program with weekends off) can be cost-prohibitive for a lot of people. A lot of the information provided is common-sense in hindsight (exercise helps, being on narcotics – for me – doesn't, meditation helps, etc. … basically finding out what works for me (or doesn't work) is mostly an individual experience and one I've had to 'fine-tune' over the years). So my opinion is the overall experience of going to PRC was helpful, but in the past 15 years since I have went to it, I've found that figuring out what helps me personally has mostly been on my own.