Autonomic Disorder and Coverage for Mayo's Pain Rehab Program

Hello and welcome, @wishfulina. I'm sorry about your daughter's diagnosis of CSS, especially at her young age. I could not agree more that the Mayo PRC is where she can greatly benefit and learn how to manage her back pain, but yes, the problem is getting insurance approval. Mine was through Medicare after being disabled for 3 years which qualified me in my 40's. I did have to wait until open enrollment to elect a more expensive plan that gave me out of network coverage. It was difficult waiting, but that's the only way I could go. Your daughter's case is different, but there still may be a way to think outside of the box and get creative to get her there.

Please meet @kari3057 who has a teenage son also trying to go to the pain rehab center and working diligently to figure out insurance coverage. Below is a recent conversation she started about just that:

- https://connect.mayoclinic.org/discussion/autonomic-disorder-and-coverage-for-mayos-pain-rehab-program/

Also, a link to Mayo Billing and Insurance:

- https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us

Have you made any progress since you last posted?

Thanks for the support and suggestions. We learned about and were excited re the program in early October during our week at Mayo. He understands and wants to do the program (he missed 1/2 of school last year and wants to be a "normal" teen--not feeling sick most of the time).

an update. we have been trying to attend since mid-October. We were "qualified" by medical 10/13. Because of the holidays, we wanted to attend end of October. Short version: Mayo still hasn't submitted all of the codes they need approved--and finally told me so this week.

Starting in October, Mayo precert kept telling me they couldn't submit a precert request. It was "impossible."
My case manager said she couldn't help us without a Mayo precert request. I kept calling Mayo, BCBS, and posted here for help. (and the Mayo person kept leaving work early so i could only leave messages)

Mayo precert finally submitted the request November 6th. My insurance approved it that same day.

I learned of the approval when talking with our BCBS case manager the following week (nothing from Mayo). She gave me the authorization # and name of approver. along with the codes Mayo submitted. I started trying to get my son scheduled.

I contacted Mayo precert. they told me the BCBS approval wasn't based on accurate info.

I contacted BCBS--they said they approved the diagnosis/procedure codes Mayo submitted. BCBS contacted Mayo precert directly to explain the approval. (I did this three times because Mayo precert wasn't "convinced.")

Finally last week Mayo Precert admitted that they didn't include the correct codes in the November 6th request. And they would resubmit another precert request with the missing codes. (and complained about how hard everything was... I asked that we focus on solutions and stop complaining)

My teenager is still missing school bc of health issues.

And financially, the cost/out of pocket in January will be so much higher than in the 2023 plan year (deductible to meet, max out of pocket etc that will be reached this year). How can i get Mayo to submit the correct codes and authorize/schedule the program now???

I am beyond frustrated. Refusing to submit a precertification request to my insurance. When it's approved, not letting me know. And now, when I try to schedule, I learn Mayo "forgot" to include all of the correct codes. and will need to submit another request but can't give any information on when that might happen.

Should I just give up? Is there a supervisor or someone with more experience/problem solving ability who can step in? I have spent so much time trying to solve this (and I have a FT+ job and a kid who needs me). and i'm the one financially impacted. I wish I could use my focus, patience, energy and solution-oriented approach to fix this mess.

any suggestions are appreciated, thank you

(and my immature comment--i am out of patience listening to her complain about how hard her job is)

@kari3057, I understand your frustration. This does appear to be much more difficult than necessary. If you haven't done so already, it is time to contact the Office of Patient Experience to help intercede on your behalf.

Mayo Clinic Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll-free)
Email: opx@mayo.edu

I'm also sending you a private message.

I don't know what anyone is expecting from the pain rehab program, but it might be a disappointment. It's all about stopping meds for your pain, not exhibiting any signs you have pain. It felt to me when I interviewed for it, that they think pain is all in a person's head. Just depends on where you are coming from I guess.

Good morning. I'm sorry you've had a difficult journey with chronic pain. I agree, it does depend on where you're coming from regarding pain management approaches. It's unfortunate the Mayo's PRC wasn't for you.

From my experience attending the pain rehab program, it is by far the opposite of thinking pain is all in a person's head. In fact several of the classroom lectures teach how pain is not all in someone's head and offers the science to back it up. Furthermore how permanent changes within the central nervous system occur resulting in sensitized sensors and chronic symptoms.

The program offers an abundance of help in the form of education, physical therapy, occupational therapy, cognitive behavioral therapy, in addition to nutrition, sleep hygiene, problem solving through modification in moderation, and yes the omission or reduction of chemicals - managed and assisted daily by one on one nurse check-ins and vital signs. The other important thing that I found incredibly helpful was the cohort of peers that I shared the 3-week program with. Also, the tools and support the PRC sent home.

At the end of the day it's each person's choice, not everyone is on board with putting in the amount of work it takes. It wasn't easy, that's for dang sure!

Since interviewing for the PRC, how have things been going for you? I hope you're doing well. Have you been finding ways to manage your pain any better?

Hi there, were you ever able to get it figured out and scheduled? Were you able to get it scheduled before January?

I’ve been told several of the Mayo Doctors/Specialists I’ve seen since July that I would really benefit from the PRC program. We submitted the paperwork through insurance and the only thing they wouldn’t cover is $1200. Because I have so many medical issues, I’ve been going to Mayo almost every week since July. The first appointment down to Florida we had appointments, labs, procedures, etc for 2-1/2 straight weeks, daily and multiple a day (Except for Saturdays). We then came home for 3 days and had to return back to Mayo for another week, came back home for 2-3 days and returned again for 2 weeks to Mayo. It’s been like that constantly and just now the appointments are slowing down. I still have 5 appointments scheduled between November 20-25 and then one more December 16th. Because of the holidays and because I still have appointments to attend and imaging and a couple other procedures, we are thinking maybe I should start the PRC in January- this of course comes with the concern that all deductibles will restart etc. I saw where you mentioned in this comment that if it was scheduled before January (in your family’s case it was for January 2024). But were you able to schedule it in November/December for it to be done after the new year? Did the price go up since it was the start of the new year or no since you scheduled it and had insurance approve it all before hand? I have the option to take it starting November 26th- ending December 17th, so if needed I can go ahead and do it. It would just conflict with some of my currently scheduled appointments at Mayo, as well as a few critical appointments and a procedure I have scheduled here in GA. I also have two small children and have seen them very little since July, so ideally would prefer to be able to start in January so I can be home and around for the holidays with them. Please let me know! I also have BCBS but it’s IL and PPO. I’m not sure what yours was; but I know mine did get approved aside from the $1200 for the behavioral therapy I believe it was.

Also how did it go? Did it help at all? Thank you so much!

Hi @jendysart, you have quite the dilemma. I graduated from the PRC in Florida 4 years ago and it did help me and was one of the best life experiences I've ever had . Understandably everyone's different and the first thing I'll tell you is you get out of it what you put into it, but that being said it is such a valuable rehab program for anyone who is living with chronic symptoms or pain. It's based around the goal of symptom reduction and increasing quality of life. It equips you with self-management tools emotionally behaviorally and physically also helps with medication reduction. Folks have graduated that have young kids like yourself and have really said they benefited greatly. I'm in a private Facebook group for graduates of the program and that's how I know, by seeing success stories. However, as I mentioned, you really have to understand what the program is about and what the goal is, along with buying into it .

Regarding insurance and not getting an answer yet from @kari3057, I'm hoping you eventually do receive a reply because I didn't have any sort of the insurance issues that you're referring to or they are referring to. I went through Medicare and paid a higher premium monthly in order to get out of network coverage and be able to go to Florida from New York. I had a pretty seamless experience with pre-certification. Now what seems to be your biggest dilemma is when to go. I feel for you, that's a tough one because you definitely want to be around and spend this quality time with your little ones especially if you've been on the go since July. Have you asked your PRC rep if price is going up for the program in January? Is meeting your deductible next year an automatic given anyway so you'll actually be at the same end game regardless of whether you go to PRC this year or next? It sounds like you have many other scheduled appointments. Is it possible to narrow down what appointments absolutely have to be squeezed in by the end of the year versus what can wait? You have many variables to think about. What does your family think? Do they think it's necessary for you to attend the PRC program by the end of the year if it's available to you?