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

Posted by swimbikerun @swimbikerun, Mar 17, 2022

Just wondering if anyone has had success with the Mayo Pain Rehabilitation Center program? That seems to be the direction my dr's are moving in but there are aspects of it that give me pause. For instance, the idea of discontinuation of pain meds. The strongest meds I'm on is Tylenol so a focus on this would not be very beneficial for me.

If anyone can share their experiences positive or negative with the 3 week rehab program I would greatly appreciate it. Also, is Mayo the only/best option? It requires travel for me with 3 weeks of hotel/etc expenses so would nice if there were other options closer to home.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@4corazon

I am signed up for the PRC in Phoenix in May but wondering what of the costs are NOT covered by insurance? I will have to stay in an AirBnB or similar, so that is a huge financial commitment. I believe it will be worth it though.

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I wanted to go to this clinic. I called and was told my insurance wasn't accepted. If you go without insurance they require a $5000 deposit just to walk through the door. I decided I couldn't go. Ironically, the other two clinics in MN and ? do accept my insurance. Go figure!

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@tallyteresa

PRC at Mayo JAX was the best thing that ever happened. It's more than pain or chronic symptom management; it's life management. At 67, I now have the tools to live my happiest and healthiest life despite an untreatable diagnosis. Prior to the clinic, I was totally deconditioned after months in bed and wondered if I could do anything in the gym or get through an 8 hour day. But the PRC team delivered for me having assured me they would make it possible. I kicked butt in the gym despite lung issues 🙂 , learned new ways of doing everything from vacuuming to problem solving to even forgiving. If anyone has a chronic condition of any kind, do not miss going! Find a way. Medicare pays for the class, and I was so desperate for help, I swallowed my pride and did a Go Fund Me for travel and lodging expenses. I wish every single person could go through this program in high school; I think had I been equipped with the knowledge and techniques I learned a couple of months ago, it's possible I would never have needed to go. True statement.

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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?

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@gregv

I wanted to go to this clinic. I called and was told my insurance wasn't accepted. If you go without insurance they require a $5000 deposit just to walk through the door. I decided I couldn't go. Ironically, the other two clinics in MN and ? do accept my insurance. Go figure!

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That seems so odd, but no matter. Your insurance will work at 2 Mayo Clinic locations and that is FABULOUS news! I went to the program in Jacksonville, FL. Have you considered it? The Dr who started the program in MN is here!! And he is incredible; had me laughing through even the heavy stuff. Think about it!!! There is a beautiful place on the Mayo campus you can stay for $40 per night and there are other good options as well. The caveat to stay at Gabriel House on campus is you need someone with you. Let me know if I can answer any questions for you. I've gained so much from PRC, that I decided to extend my stay after the clinic was over 2 months ago and yesterday, decided to make Jacksonville my home. These Mayo Drs, nurses, therapists, team members!!!! And the friendship /support of others who live here who've been through it made the decision easy. I've got my fingers crossed for you that you can make this work!!!!

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@rwinney

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?

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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.

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@gregv

I wanted to go to this clinic. I called and was told my insurance wasn't accepted. If you go without insurance they require a $5000 deposit just to walk through the door. I decided I couldn't go. Ironically, the other two clinics in MN and ? do accept my insurance. Go figure!

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Just for gee whiz information - what other clinics in MN did you check out?

Thanks!

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@gregv

I wanted to go to this clinic. I called and was told my insurance wasn't accepted. If you go without insurance they require a $5000 deposit just to walk through the door. I decided I couldn't go. Ironically, the other two clinics in MN and ? do accept my insurance. Go figure!

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Hi Samson, I misread your post initially and thought you found a different clinic altogether. If one Mayo Clinic accepts your insurance, they all should. To clarify, the Mayo Clinic has 3 locations -Minnesota, Arizona and Florida.
All 3 have Pain Rehabilitation Centers (PRC) and offer the pain rehab program.

Here is more information about the Mayo Pain Rehabilitation Center including accepted insurance and a link to apply:
- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/costs-insurance/ptc-20481890

Also, here is a specific link to insurances that are accepted:
Insurance types accepted at Mayo -
- https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance

I hope this helps. Please inquire further into the program if you feel you can benefit from this type of rehab. It truly is a life changing experience. Are you willing to share more about why you'd like to go? Which Mayo location would be nearest you?

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@rjjacobsen

Just for gee whiz information - what other clinics in MN did you check out?

Thanks!

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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.

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@rwinney

Hi Samson, I misread your post initially and thought you found a different clinic altogether. If one Mayo Clinic accepts your insurance, they all should. To clarify, the Mayo Clinic has 3 locations -Minnesota, Arizona and Florida.
All 3 have Pain Rehabilitation Centers (PRC) and offer the pain rehab program.

Here is more information about the Mayo Pain Rehabilitation Center including accepted insurance and a link to apply:
- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/costs-insurance/ptc-20481890

Also, here is a specific link to insurances that are accepted:
Insurance types accepted at Mayo -
- https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance

I hope this helps. Please inquire further into the program if you feel you can benefit from this type of rehab. It truly is a life changing experience. Are you willing to share more about why you'd like to go? Which Mayo location would be nearest you?

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Okay, you have made me want to get back on and research all of this further. First of all, WHAT exactly would cost 50K?!!! Second, would anyone know how to figure out just what this 3 weeks does cost? Do they have a place or person that breaks down the course and explains; brochures, website, anything?! I'm calling Blue Cross today to see what they can help me with. I am a colon cancer survivor (2020-21 treatment). My diagnosis now is that I have Anklyosing Spondylitis, Fibromyalgia and Degenerative Disc Disease. I have pain every day and have tried everything available. I've made a very long list on our computer of all the people I have seen and treatments I have tried. Biologics either didn't work or I severly reacted. I live on Tramadol along with whatever I deem workable for that day. I do, exercises, massage, PT, heat, ice, CBD, and myofacial release. I'm 64 and I'm very tired. I am hoping that maybe this would give me a life again.

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@gregv

Okay, you have made me want to get back on and research all of this further. First of all, WHAT exactly would cost 50K?!!! Second, would anyone know how to figure out just what this 3 weeks does cost? Do they have a place or person that breaks down the course and explains; brochures, website, anything?! I'm calling Blue Cross today to see what they can help me with. I am a colon cancer survivor (2020-21 treatment). My diagnosis now is that I have Anklyosing Spondylitis, Fibromyalgia and Degenerative Disc Disease. I have pain every day and have tried everything available. I've made a very long list on our computer of all the people I have seen and treatments I have tried. Biologics either didn't work or I severly reacted. I live on Tramadol along with whatever I deem workable for that day. I do, exercises, massage, PT, heat, ice, CBD, and myofacial release. I'm 64 and I'm very tired. I am hoping that maybe this would give me a life again.

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That's great news Samson. Good for you! From what you describe you've been through, you sound like a probable candidate for the PRC. FYI - I used to have that same list, in a spiral notebook, and kept adding to it until one day I said, this is enough, if I don't make change, change is never going to happen.

A few signs to know you are ready for Mayo's 3 week Pain Rehabilitation program:

1. treatments are faltering and becoming less effective
2. emotional distress
3. physical deconditioning with potential for pushing and crashing

Here's a link to the pain rehab center detailing the program and offering all 3 locations for you to contact:

- Mayo Pain Rehabilitation Center - Overview -
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

The staff at Mayo is extremely helpful. They will answer your insurance questions and any and all concerns.

I think the following discussion about the PRC will be helpful for you to scroll through from the beginning and find helpful info and insight:

- Mayo Pain Rehab Program - Signing Off and My Comeback Afterwards:
- https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/

As @tallyteresa mentioned earlier, the PRC gave her her life back. I second that statement, and I bet @ldb would, too. Here is proof of that in his own words from the thread -Mayo Clinic Pain Rehab Center (PRC) - What's Your Experience?
- https://connect.mayoclinic.org/comment/852488/

Samson, you will have support from Connect and a wealth of knowledge and experience. I encourage you to self-advocate and try. I know it's scary, but you owe it to yourself to at least see if it can happen. Will you keep me posted on your progress?

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@gregv

Okay, you have made me want to get back on and research all of this further. First of all, WHAT exactly would cost 50K?!!! Second, would anyone know how to figure out just what this 3 weeks does cost? Do they have a place or person that breaks down the course and explains; brochures, website, anything?! I'm calling Blue Cross today to see what they can help me with. I am a colon cancer survivor (2020-21 treatment). My diagnosis now is that I have Anklyosing Spondylitis, Fibromyalgia and Degenerative Disc Disease. I have pain every day and have tried everything available. I've made a very long list on our computer of all the people I have seen and treatments I have tried. Biologics either didn't work or I severly reacted. I live on Tramadol along with whatever I deem workable for that day. I do, exercises, massage, PT, heat, ice, CBD, and myofacial release. I'm 64 and I'm very tired. I am hoping that maybe this would give me a life again.

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As a recent PRC grad, I'm hoping hard that you can make this happen! You can read about my life-
changing, life-giving experience in Jacksonville in other posts and comments. As I said there, I wish everyone could go through it!! I don't dwell on diagnoses past or present, but do want to tell you we share some. I'm a 2 time cancer survivor, the last being colon and fibromyalgia is among the many issues I was dealing with prior to PRC. I have my life back with tools to make it healthier and happier than ever before. Getting there took doing my own Go Fund Me to pay for lodging and transportation while Medicare and my supplement took care of the rest. I have suggestions for affordable accomodations and transportation options in the Jacksonville area if you are considering the program here. I'm so grateful to be able to offer any information I found that might help you and others do this program!! 💜

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