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Mayo Clinic Pain Rehab Center (PRC) - What’s Your Experience?
Chronic Pain | Last Active: 21 hours ago | Replies (116)Comment receiving replies
@johnnymnemonic wow, what a great perspective. Thank you for joining the conversation. It's not often that a parent voices experience about their child in the PRC program. The financial commitment can be a burden is not covered by insurance . I guess you could say it can be a bit of a gamble or on the positive side, and investment.
Having gone through the program, I can attest to the fact that you do really need to be a believer in the scientific concept of central sensitization and I think be confident that you have ruled out any other possible diagnosis. In my case after several years there was really nothing left to make sense of my symptoms.
I'm really sorry that your daughter is going through such challenges with migraine. I once was one of those folks sitting through infusions try to help migraine and other chronic pain issues. I gave it my best try for months and it just wasn't doing enough, that's when I realized I had to take matters into my own hands through lifestyle changes and Stress Management among chemical reduction. This can be a daunting process and require mental fortitude so I understand how your daughter may not have fully bought in if she wasn't ready . May I ask how she is doing presently with symptoms?
Replies to "@johnnymnemonic wow, what a great perspective. Thank you for joining the conversation. It's not often that..."
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Hi @rwinney - We only left Mayo just last Wednesday. Due to all the other expenses we had incurred and flights on short notice being expensive, we drove home Thursday and Friday in our rental car - 16 hours. Our daughter is going to school this week and doing what she is supposed to do. We are basically following the guidelines of PPRC to a tee at home. So far things are fairly similar. She still has chronic dizziness. She still has pediatric non-eplieptic episodes (mostly at night). I feel the moderation is helping the ebb and flow of severe migraines. She has only used one rescue pill since we got a new refill early last week. We can report back here in a couple months with a better assessment. PRC doesn't promise a reduction in symptoms, but an increase in function. Through what we were already doing beforehand we were getting more functional, and learning PRC methods has helped reinforce and add positive behaviors and reduce negative ones.
The main thing I want to be sure comes across is that in "rounds" at PRC, the patient themselves must buy in. It doesn't matter if the parents are fully on board, the child has to be. Also to emphasize - because of what's out there on Reddit, etc, several kids in the program seem to have a very negative attitude. Quite frankly I'm still shocked that we got kicked out. My daughter paid a price for her honesty and there was no additional patience for trying to get her on board after a certain point. You can't just stay in PRC for the social time and the daily PT, you actually have to believe it or else you're out. And of course you can lie your way into staying (which we didn't do). Although in this particular instance I feel we were penalized for our honesty. "Open communication led to closed doors".
Do not let this happen to you. Be prepared.
In other words, you may think you "cut the mustard" but you might not cut the Mayo.