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Anyone had a successful experience w/ Mayo Pain Rehabilitation Center?
Chronic Pain | Last Active: Jul 23, 2023 | Replies (44)Comment receiving replies
I can not agree with you more @tallyteresa. You've really hit the nail on the head, and by sharing your positive experience, have helped many folks out there pondering. Yep, the cost and insurance definitely comes in to play. After being on disability from work for 3 years, I was about to be declared permanently disabled at age 50 so, waited until Medicare kicked in then chose a plan that allowed out of network coverage so I could get to FL from NY. All was paid except travel, food and lodging. I was very fortunate that a family member helped with those expenses.
Out of pocket is around 50K. Ouch!! @gregv's insurance does not cover Mayo but they found other programs that accepted their insurance. Perseverance is the key. That's why it might take a little creative planning like you did, tallyteresa, by raising funds on your own - pretty impressive! I'd like to invite Alan @alh123 to the conversation to share his journey of perseverance in getting to the Mayo PRC from Canada. He is currently scheduled to attend in June, I believe.
My experience was like yours, tallyteresa, and while I sat in class everyday wondering how the heck am I getting through this...the PRC lifts you up and shows you the way. I thought how awe-inspiring it was for anyone really, chronic pain or not. A foundation for life - physically, emotionally and behaviorally. (Yep, agreed, high schoolers should learn this type of life management.) For me, weaning off opiates was one of my main goals. Help and support with chemical elimination and reduction was a huge asset in my rehabilitation.
You were problem solving even before you went to PRC from the sounds of it by raising funds to help with your stay! I think it really takes some sort of inner motivation and fighting spirit to commit to an intensive pain rehabilitation like the PRC. Even if you feel depleted from pan and lack motivation from deconditioning and depression, the will is buried and needs to be found again. Peer support was helpful in feeling less alone and being with others like yourself who understand, makes the program easier. Being in a situation with accountability and support constantly creates an atmosphere that you want to succeed in.
Tallyteresa, you say - "At 67, I now have the tools to live my happiest and healthiest life despite an untreatable diagnosis." What advice do you have for someone not sure about applying to the pain rehab program?
Replies to "I can not agree with you more @tallyteresa. You've really hit the nail on the head,..."
Well Rachel has invited me into the PRC discussion to share my experience coming from Canada . I am 64 and have had a severe leg neuralgia for 12 years . I was booked to start in early April in Phoenix .
I apologize in advance as what follows qualifies as a bit of a rant.
I was doing poorly in so many ways, that I became very concerned that I was too “sick “ to go . A classic catch-22 , if there ever was one. I eventually got a call from the main Dr ( after a lot of trouble and 2 plus weeks ) and she agreed with my concerns that I was too messed up to attend ..by that I mean , I had too many things that needed addressing , that I had to change something before coming down .
In addition to everything that 10 years of severe neuropathic pain brings ( I hit all the areas of decline !) I also have a very disturbed biological clock . This was determined to be just one thing too much to give the course a chance of success ( why they start a chronic pain course at 745 am meaning an 0630 wake-up time is beyond me .. this is not a time for tough love ..pacing and scheduling ,yes )
Anyway , it was determined that I needed to change my clock dramatically . I was waking at 11 am or later after pain filled sleepless nights .
As a result , my course was postponed and I am now starting May 30 in Phoenix . I was given a list of instructions and promised a direct line to the Dr to address my concerns . A follow up email with some questions from me regarding this has not been answered …so it’s obvious I’m still on my own .
In terms of process , I have not been impressed at all with their communication skills . I had to aggressively chase them with phone calls and urgent messages to finally get a reply. I got a lot of instructions and then no follow up on my progress . This after paying the $ 55,000 US registration fee out of my own pocket , up front . (This is before the $3400 air BNB for 3 weeks , car rental and meals . ..with the conversion rate , I will be close to $100,000 CAN . )
With their reputation and high cost , I would have expected first class communication skills and better service than this . In retrospect from what I’ve read here , I wish I’d enrolled at one of the other locations ..but I’m committed now . Just got to hope that they live up to their reputation of a high level of expertise .
Meanwhile, the date is getting closer and I’m struggling with this clock change , as I can change wake up times , but my pain just flares or doesn’t shift . Less sleep means more pain …so I don’t know if I’ll make it. I’m winging it and doing the best I can . Im sort of hovering with great difficulty at between 9 and 930 with 3 weeks to go.
Wish me luck , I need it !
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Thank you for the kind words, but be clear I'd run out of options and wanted to live again so that problem-solving was necessary. I awakened on my birthday months after they had tried to get me in the program realizing that I wasn't contributing to the world anymore and that I could never
again without helping myself first. So this 4-decades long volunteer cancer counselor, advocate for anyone less fortunate, fundraiser for all good causes, and more asked for help for the first time in my life. And those donors made it possible for me to be out in the world again, different but better than before. I want to emphasize that this program is for more than pain mgmt. I hear Dr Sletten is reworking the literature to reflect that this truly is for anyone with a chronic issue such as Long Covid patients and more. I wasn't on opioids, but was on a bag full of supplements, OTC pain relievers, and 3 or 4 Rx's. I now have aspirin in case I spike a fever, lol; oh! I am still on a statin, but it's now the lowest dose 🙂 Amazing what water, a healthier diet, and exercise can do for you on top of the other behavioral changes 😉 My advice to anyone thinking about it is love yourself enough to seriously consider making it happen. I am reminded that we aren't really supposed to "pitch" the program to others. Part of the journey to success with this or whatever someone chooses to do is the process that gets them there.