Anyone had a successful experience w/ Mayo Pain Rehabilitation Center?

I'm told they have two more locations; one in Minnesota and one in Florida. I have nowhere to stay if attending these, so for now I am withdrawing.

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?

Hello @swimbikerun. Yes, I graduated Jacksonville's Pain Rehab Center (PRC) and have had success. It was the best thing I could have done for myself in learning how to live with a chronic pain syndrome. Mayo Clinic is world-renowned therefore I believe it is the best of the best and was the only option in my mind. I traveled and stayed in a hotel for 3 weeks. It was a big commitment, but one that I have no regrets making.

You may find this conversation helpful:

Questions About Mayo Clinic Pain Rehab -
- https://connect.mayoclinic.org/discussion/status-of-mayo-clinic-pain-rehab-program/

Discontinuing medication is one aspect of the pain rehab program. There is much more to rehabilitation, both physically and mentally, and Mayo does a phenomenal job covering all bases.
Here's info on PRC:
- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

I noticed you had planned a trip to Jacksonville March 7th. May I ask if you have met with Mayo doctors? Are they who is moving you in the direction of pain rehab?

It sounds like you might be suffering from Abdominal Cutaneous Nerve Entrapment Syndrome (ACNES). I recommend you do the Carnett test (watch video on youtube) and find a pain management doctors who will give you trigger point shot(s) to that area. It that knocks out the pain (only temporary) you have ACNES. I had a terrible case last year. After nine months of suffering I was fortunate to find Dr Thomas Gillespie at St Joseph's Medical Center in Phoenix AZ who performed Robotic Laparoscopic Surgery cutting my T8, T9 and T10 nerves - lower right rib cage. I went home CURED that same afternoon. Now, just a distant memory. Dr Gillespie takes new patients. I was totally covered by Medicare.

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 !

Hello Alan, it's been some time since May 30th and your scheduled trip to Arizona PRC. How are you doing? Do you care to share any updates?

Hi Rachel,
Thanks for checking in with me. Yes, I did manage to go down to Phoenix and completed the three week PRC program. Overall, it was a very positive experience and I’m glad I went. I made progress on changing my biological clock, I weaned off the majority of my opioid meds , and I engaged with a new type of peer group that was focussed on function rather than symptoms. It was very validating to realize that people with major chronic pain challenges end up in the same place regardless of diagnosis. On arrival at the course we were all isolated, afraid of exercise and living a life dominated by suffering. There were some people that had dramatic turn arounds as they had not been exposed to the various tools that the course introduces you to. There were others like me who made more more modest progress in the form of baby steps. I’ve been back two weeks and as expected, it’s been very challenging to apply the knowledge I gained at the course. It’s been disappointing to have several relapses back into the crash and burn cycle, but overall I feel that I’m moving forward, however, slowly . Most importantly, I made sure I have put in supports, moving forward as now is the time when the real work starts. I have a local pain coach and psychologist as well as the peer group from the Mayo plus continuing advice from their physiotherapist.
All the pieces are there .. it’s up to me now.

Hello Alan, it's been some time since May 30th and your scheduled trip to Arizona PRC. How are you doing? Do you care to share any updates?

Hi Rachel,
Thanks for checking in with me. Yes, I did manage to go down to Phoenix and completed the three week PRC program. Overall, it was a very positive experience and I’m glad I went. I made progress on changing my biological clock, I weaned off the majority of my opioid meds , and I engaged with a new type of peer group that was focussed on function rather than symptoms. It was very validating to realize that people with major chronic pain challenges end up in the same place regardless of diagnosis. On arrival at the course we were all isolated, afraid of exercise and living a life dominated by suffering. There were some people that had dramatic turn arounds as they had not been exposed to the various tools that the course introduces you to. There were others like me who made more more modest progress in the form of baby steps. I’ve been back two weeks and as expected, it’s been very challenging to apply the knowledge I gained at the course. It’s been disappointing to have several relapses back into the crash and burn cycle, but overall I feel that I’m moving forward, however, slowly . Most importantly, I made sure I have put in supports, moving forward as now is the time when the real work starts. I have a local pain coach and psychologist as well as the peer group from the Mayo plus continuing advice from their physiotherapist.
All the pieces are there .. it’s up to me now.