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

Hi there, @connie2023 - I'm shifting our conversation to this thread in order to stay on topic. How did your second Mayo PRC appointment with their psychologist go?

Hi, @tallyteresa, checking in to see how things are going in your C-life these days? Have you met any current goals or set new ones?

@rwinney and @tallyteresa it went well and I am scheduled to attend the PRC toward the end of October. I have been in a whirlwind of activity since I got home so I have not had time to look over the materials they gave me, but I am looking forward to attending the 3 week session. Luckily, it is covered by Medicare and my Supplemental, so my only expenses will be for lodging and meals. My husband and dog will be joining me as I cannot drive a rental car. I can only drive mine because it has the left foot accelerator pedal enabling me to drive with my left foot. Next step will be to start looking for an AirBNB.

Fantastic news, @connie2023! Congratulations on being scheduled for October and that much closer to your PRC experience. You are giving me a dejavu moment as I also attended during October, and was covered through Medicare and my out of network supplemental plan. Many people don't think Mayo PRC accepts Medicare but they do and it's wonderful . You are fortunate to be able to save on airfare by driving with your companions. Aw, how nice your husband and dog will both be there through the 3 weeks to support you.

If you've had a chance to go through your paperwork and have any questions at all, please do not hesitate to reach out. I'm happy to help. I recall having multiple concerns leading up to my attendance. Is there any one area of the program that you feel apprehensive or concerned about?

What is the free one? Gabriel house is the $40 a night correct? I’ve visited there. I know there is Hope House (believe that’s what it’s called?) But I read on the pamphlet of that, they only accept cancer patients. Is that true? Thank you for taking the time to read this. I will be attending Mayo Clinic PRC in January.

I have been diagnosed with CSS and Mayo recommended their 3 week program. I don't need occupational therapy or pain management as I am not on any type of Opioids. I am already understanding a lot of the concepts of pacing yourself and eating differently and breathing exercises. It is expensive and apprehensive about doing this program so I am also in the hopes of some people's experience with that program. Thank you 🙂

Hi Rachel,

I live in North Idaho, so I am not close to any of the centers. I have a surgery scheduled at Mayo Rochester and would like to consult with a physician who is knowledgeable about Central Sensitivity Syndrome so that I can make sure my surgeon takes steps to minimize chance of a flare up. Because I am not technically a Mayo patient until I show up for the surgery, the Mayo staff are not willing to discuss my other diagnoses and how they will affect surgery until I get there. As you can imagine I don't want to travel 20 hours to find out IF they will be able to accommodate my other challenges. So my question for you is, do you happen to know of a list somewhere of other practitioners in the country who work with people who graduate from the Mayo pain program? I cannot find anyone near me who knows anything about CSS, but I"m hoping I could do telehealth or drive less than 20 hours to get some advice for the surgery. I'm looking for help in figuring out what kind of anesthesia, how the incision itself might affect my nervous system, etc.

Thank you for any help you can give!

Coppertop

Hi @coppertop10, thank you for reaching out. I definitely understand your concern of how your body will respond to surgery and recovery given the fact that you have central sensitivity syndrome. First, may I ask when you graduated from Mayo Clinic Pain Rehabilitation Center? Which location did you attend, MN, AZ or FL?

Thanks for responding, Rachel. I have not attended the pain clinic. I tried to set up a telehealth consultation with the pain clinic prior to the surgery, but they would only see me in person and it would require a separate 20 hour each direction trip. (I am not able to fly due to my symptoms, so I have to drive everywhere. ) My hope is that I can find an outside practitioner (maybe who works with graduates of the program) who can advise me and also provide input to the surgeon. Appreciate your help!

Hi there @kmdenton33. Living with CSS can be very challenging. I'm sorry to hear you've been diagnosed with it. I completely understand your apprehension about applying to the pain rehab program, it is expensive and a big commitment for 3 weeks.

My experience with PRC was fantastic and life changing. It was intense, but well worth the investment as it taught me so much about myself physically emotionally and behaviorally, and gave the tools for me to have a better quality of life. What I liked best was that PRC teachers fundamentals of comprehensive pain management which apply to the person as a whole. It's important to go in with an open mind and be dedicated to learn and accept change. FYI, you don't need to be on opioids to attend the program.

There is a the CSS video by Dr Sletten from the Florida pain rehab Center which really gives a good breakdown of what CSS is and how the program helps. Have you seen this video yet?