Mayo Clinic Pain Rehab Center (PRC) - What’s Your Experience?

Alan, I'm interested to hear how your phone appointment went with the PRC team. Did they feel that you are a good candidate for the program? What are your thoughts at this point?

The Dr was very pleasant and nice , however It was a waste of time really..and of 800$ Canadian dollars.
The Dr wasnt from the PRC . It was only “confirming “ my medical history details that I sent in . Basically making sure I didn’t have a heart condition to,prevent me from attending. No questions answered about the program etc.
As a retired physician , this should have been done on a case by case basis , as I had sent in a very detailed medical history and medication list .
So , it’s all down to one appointment next week .
I am more than a little annoyed and have asked if they have a discount for self pay or out of country applicants . The cost of this program is and will be a huge burden to a fixed income . All 4 of the other US medical groups I had surgeries etc with had discounts for people in my situation.
So I’m a bit grumpy with no new information .
Thanks for asking .

@alh123 I'm sorry. I can understand why that would be a frustrating experience. It sounds like the initial phone appointment I had before I went to Mayo back in October. The appointment was basically reviewing my medical records/medications/etc. I hope they are able to do something for you to help with the costs.

Well in the end the Dr .came up with a nice report and summary plus an opinion stating that I was a good candidate for the PRC. I’m pretty sure the next Dr will say the same thing . So I’m pretty sure I’ll be going.
Still wondering how much room for behavioural modification there is with the particular characteristics and intensity of my pain . It’s very daunting to have to trust a system that says it can help me change my functionality significantly, without any new treatment , some medication weaning and some group therapy going over pain concepts that I have already explored in depth over 12 years. I lie here suffering intently ,despite applying mindfulness , an attitude of gratitude and positivity and having paced myself to best of ability today. I feel like ,perhaps , I am too far gone down the rabbit hole to be able to expect much change . Somewhere on the bell curve of chronic pain patients there must be outliers that are outside the therapeutic window . I feel like I may well be one of them . The PRC must have data on this which I guess it doesn’t publish. All I can do ,as you suggested , is trust and believe in the system , drink the Kool-aid , if you will and immerse myself in the schedule , somehow pushing past the inevitable huge flare up that getting there and adapting is going to induce . As I said , daunting .

Well in the end the Dr .came up with a nice report and summary plus an opinion stating that I was a good candidate for the PRC. I’m pretty sure the next Dr will say the same thing . So I’m pretty sure I’ll be going.
Still wondering how much room for behavioural modification there is with the particular characteristics and intensity of my pain . It’s very daunting to have to trust a system that says it can help me change my functionality significantly, without any new treatment , some medication weaning and some group therapy going over pain concepts that I have already explored in depth over 12 years. I lie here suffering intently ,despite applying mindfulness , an attitude of gratitude and positivity and having paced myself to best of ability today. I feel like ,perhaps , I am too far gone down the rabbit hole to be able to expect much change . Somewhere on the bell curve of chronic pain patients there must be outliers that are outside the therapeutic window . I feel like I may well be one of them . The PRC must have data on this which I guess it doesn’t publish. All I can do ,as you suggested , is trust and believe in the system , drink the Kool-aid , if you will and immerse myself in the schedule , somehow pushing past the inevitable huge flare up that getting there and adapting is going to induce . As I said , daunting .

Well in the end the Dr .came up with a nice report and summary plus an opinion stating that I was a good candidate for the PRC. I’m pretty sure the next Dr will say the same thing . So I’m pretty sure I’ll be going.
Still wondering how much room for behavioural modification there is with the particular characteristics and intensity of my pain . It’s very daunting to have to trust a system that says it can help me change my functionality significantly, without any new treatment , some medication weaning and some group therapy going over pain concepts that I have already explored in depth over 12 years. I lie here suffering intently ,despite applying mindfulness , an attitude of gratitude and positivity and having paced myself to best of ability today. I feel like ,perhaps , I am too far gone down the rabbit hole to be able to expect much change . Somewhere on the bell curve of chronic pain patients there must be outliers that are outside the therapeutic window . I feel like I may well be one of them . The PRC must have data on this which I guess it doesn’t publish. All I can do ,as you suggested , is trust and believe in the system , drink the Kool-aid , if you will and immerse myself in the schedule , somehow pushing past the inevitable huge flare up that getting there and adapting is going to induce . As I said , daunting .

Hey there- @chelle2001. Given all you've just expressed, you seem to have a pretty solid handle on understanding CSS and what your best path forward is. Recognizing that can be the first step. Good for you!

Regarding the past 5 years of your treatments, you're right Doctors have their lanes of specialized knowledge. Most times they do the best they can with what they have, know or are willing to expand upon.

I also experienced hyperalgesia which is when pain is intensified by medications, mainly opioids, and causes an adverse reaction. It took a while to come to grips with that one.

Please remain persistent with PRC as you are doing. Express all that you have here to me on Connect and stay in communication with them. Perhaps emailing a follow up with your thoughts, wishes and intent in addition to phone conversation will be helpful.

Stay diligent and keep the faith. Please let me know how things progress. 🤞🏼🤞🏼🤞🏼

PS: When replying to a specific post, hit the blue "Reply" button plus tag the person you wish to see your response by including their "@title". For example @alh123. This way they know your reply is meant for them and they will receive a notification, if their notifications are turned on. After tagging once, you can just hit reply within the continued conversation.

Hi @alh123, I'm interested to hear how your phone appointment went with the PRC team. Did they feel that you are a good candidate for the program? What are your thoughts at this point?

Well I was talking about possibly being too far down the rabbit hole for the PRC program . Today didn’t help . Today was my main application video appointment . I had to cancel my pain program appt because I was in too much pain. Talk about irony ! . My neuralgic pain flares are like trigeminal neuralgia or a glossopharygeal “ brain freeze “ . You’re being zapped so it’s not like a pain you can push to the back of your mind with mindfulness or other visualization techniques .. it’s a non functional situation . They form the basis of my struggle. I have great concern about how I’m going to be able turn up every morning 745 am having had breakfast and having travelled on a shuttle. The rest of the program is totally within my grasp .. but their words about arriving each morning “ regardless of the level of pain “ seem to exclude patients like me . Perhaps I should be looking for some kind of residential program as they seem quite firm on this point . I’m all for a bit of tough love to motivate people to get up and at ‘em but somehow fear that I am going to fall between the cracks . I guess I’ll discuss this when im able to reschedule my appointment. I hope they have a contingency plan .

I'm sorry to hear that your pain prevented you from having your second appointment. That must have been frustrating. I think it's good that you're really thinking through all this ahead of time to make sure it's the right program for you and what you need rather than just pushing forward and finding out once you're in it. I hope once you get your second appointment that it will provide the clarity you need whether to move forward with the program or not.