Mayo Clinic Connect
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?
Liked by elle1233
I have never heard of a pain clinic for gastro where is it?
It’s not just for Gastroparesis but the Mayo dr recommended it. That’s why I’m asking. It seems more focused on people getting off opioids. Rochester Mayo Clinic.
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Oh ok. I was hoping it was something to help with the pain of gastroparesis.
Thanks for answering back.
I think it’s odd that most of the answers you get from mayo aren’t covered by insurance or you have to fight to get it covered….
Liked by mermaid7272
That’s what the Mayo Gastroparesis Dr is recommending for the gastroparesis
I’d like to provide some more information regarding Mayo Clinic’s Pain Rehabilitation Center (PRC).
The 3-week program is intended for adults whose chronic pain is a major health issue and who, because of pain, have experienced a significant decline in functional abilities, mood and quality of life. Each PRC employs an integrated team of health care professionals trained in many areas, including pain medicine, physical therapy, psychology, occupational therapy, biofeedback and nursing.
The two-day pain rehabilitation program at Mayo Clinic's campus in Minnesota teaches adults with chronic pain the skills they need to self-manage their pain. The program uses a cognitive behavioral model to teach people coping skills to manage pain, with an emphasis on improving function and reducing unnecessary health care utilization. It doesn't include physical or occupational therapy, or medication management for discontinuing pain medication. https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/services
At present, Mayo Clinic gastroenterologists who work with the PRC are conducting clinical trials of new ways to diagnose and treat gastroparesis. For instance, researchers in the Enteric Neuroscience Program are studying the underlying mechanics of the digestive system, including nerve reflexes between the stomach and brain, as well as new methods of gastric biopsy to better understand the underlying causes of gastroparesis. https://www.mayo.edu/research/labs/enteric-neuroscience/program-projects?_ga=2.120607240.1253461798.1570995580-1699395448.1566397261
Here are two Connect discussions about the pain rehab. program that might interest you:
I'd also like to invite a few members who have talked about their experiences with the Pain Rehabilitation Clinic – please meet @joanmahon @titansmistress @tazscott @pammaw @tomb1
@ginnyodie, would you share a few details about how you’ve coped and managed thus far? Do you know if there’s a probable cause (diabetes, Ehlers-Danlos syndrome, other autoimmune disorders) for your diagnosis?
Thank you very much for all the information. I Unfortunately we found out today BCBS denied the appeal. As we did not have the $45,000 to put down we were dropped from starting on Oct 24. So I guess it’s a mute point. Having ended up in the ER and hospitalized for 2 days following 3 pills of Motegrity we are now sadly out of options.
@ginnyodie I am really sorry that the appeal has been denied and that you no longer have that option. I am not familiar with gastroparesis, what type of pain does it cause? I hope you are able to find some options that will help you.
Wow, is that the fee for just the program, not including what it would cost to stay there for 3 weeks? Holy moly! It was recommended to me also, however my Mayo Dr. and I have a philosophical 'difference of opinion" in how to treat me, so I fear we will be breaking up. 😀 😀 😀 . I had some great testing there and they found some things that there are potential treatments for, and I feel further exploration could be helpful.. i.e I am interested in getting rid of my problems (if possible), not "learning how to live with pain", which I see as last resort.
I also wanted info about what this program was, and didn't get any, was told I would get that during evaluation, which I could have on the phone. I said I would do that, but they just set it up at a time a couldn't make, so when I tried to reschedule, they said I had to come in person (I'm not local).
I'm assuming it's the usual stuff.. meditation, exercise, 'stress relief', I guess there is some physical and occupational therapy.
I was worried about paying for a hotel for 3 weeks, and again, would rather explore some treatment options, but am curious to read any answers!
It's a program for pain in general. I don't know if it's specific for GI pain although the GI clinic does send people there. Basically for people with pain they don't know what to do about.
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.
Liked by JK, alumni mentor
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.
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