Pills for Breakfast: Is the Mayo Clinic’s Pain Program Worth It?

Pills for Breakfast: Is the Mayo Clinic’s Pain Program Worth It?

So I’m pretty sure my insurance isn’t going to cover the three-week pain program at the Mayo Clinic.

Or at least that’s how the registered nurse I talked to on the phone made it sound.

She said something about how my specific insurance has never actually covered the pain clinic for anyone before. Then, because she didn’t want to completely dash all my hopes and dreams, she tried to pretend like I might be different somehow. She went on and on about how young I was, how sick I was, and how I had tried everything else, so I didn’t really have any other options. And she said maybe, somehow, I’ll be able to convince them cover it.

The thing is, I’m not even sure I really want them to.

450px-Mayo_Clinic_Rochester_Gonda_w_trees_3890pAside from the obvious logistical issues — like figuring how to tell my boss that I need three full weeks off work, or paying for 21 days at a hotel, or figuring out how to get myself to Rochester, Minnesota and back — I’m just weary of the program in general.

The most obvious red flag is that the nurse flat out said that their goal is to get patients off all their opioids by the end of the program.

Call me a drug addict if you want, but I was hoping the goal was to make me feel better. Apparently, I was a little off. The nurse told me multiple times that the program was “not a fix for the pain.” It’s more about helping you learn to live with it — something I thought I was already doing pretty well.

Plus, I’m just not sure I’m ready to go off my opioids. It’s taken me almost two years to find a balance of medications that I can live with, and I’m extremely weary of messing with it.

When the nurse started preaching against the evils of opioids, I wanted to stop her and ask if she’d ever been in obscene, chronic pain. Because I’d bet my last pain pill she hasn’t. It’s always the healthy people who are staunchly opposed to opioid medications.

Like so many other chronic pain patients, the opioids have literally saved my life. They’ve helped me keep up the good fight when I didn’t think I could endure any longer. They’ve kept the pain at bay so that I could shower, work, and even go shopping sometimes. They’ve been the only thing to offer me a much needed reprieve from the pain on a regular basis — so when all hope was lost and I started to worry I’d be living with a knife-like pain for decades, I could take a breath and remember that the pain would eventually go away again, if only for a little while.

Of course, it’s more than just the idea of giving up opioids that worries me. There’s the obvious stuff, like how would I survive out there alone for three weeks, seeing as how I currently rely on my mom for something as simple as my laundry? Or do I have it in me to continually show up for such an intense, daily program? And, most importantly, what if everyone there sucks and is mean?

But there’s the other stuff too. The kind of stuff you find yourself worrying about when you’re chronically sick and you’ve been disappointed too many times to count.

Like, what if they can’t help me? What if I go through this whole program and I come home and I’m exactly the same? Then what? Are there any options left?

Or why exactly would my insurance company refuse to cover it? I’m certainly not one to defend an insurance company, but do they have some sort of legitimate reason? Do they deny claims for the program because it doesn’t work? Or because it’s not based on enough research?

Or maybe, worst of all, what if I fail? What if I go there and the program is too much for me? Or I can’t cope with the changes or I don’t have it in me to do the work? What if, at the end of the day when I leave, I’m still just as sick as I was before and I’m left wondering if there was something more I could have done?

So no, I’m not sure that I even really want my insurance company to cover the three week pain program at the Mayo Clinic. The good news is they probably won’t.

Crystal Lindell LargeCrystal Lindell is a journalist who lives in Byron, Illinois. She loves Taco Bell, watching “Burn Notice” episodes on Netflix and Snicker’s Bites. She has had pain in her right ribs since February 2013. It is currently undiagnosed.

Crystal writes about it on her blog, The Only Certainty is Bad Grammar.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

 

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What this program is offering can be achieved with education and taking the necessary steps to “Swing the Curve” from the negative side of the Pain Cycle to the positive and these steps are: Acceptance, Forgiveness and Belief.

This part takes time and effort but many have done it. I walked 3000 miles to prove it. I went from contemplating suicide to the Walk in 6 months. I did it this way because I am very poor and without good insurance. It has been 10 years now and it’s still working for me. Although I “kicked” 2 cancers, diabetes and kidney disease I could never get rid of the original bone marrow disease and in these 10 years I can no longer walk. Still happy, still productive, still enjoying a life without doctors & meds (except pain meds). Freedom is everything!

If you want some free info, write to me at dennis_kinch@yahoo.com.
I’m saying you can do it but I’m saying it for free and proving it too. What Mayo and others are doing is worthy stuff, just not for poor people. we have to do things on our own, huh.

Alyson

I encourage you to try and appeal your insurance’s decision. I’m not pretending to be an expert in the area of insurance, but I’ve also had the “pleasure” of being denied for certain treatments initially only to eventually receive coverage. Insurance can be an incredibly frustrating thing to try to figure out as patients, but it’s unfortunately an annoying reality we have to deal with at this point in time. I’ve also learned that just because an insurance program won’t initially cover something, it doesn’t mean that’s the final decision.Sometimes, it just depends on who you’re able to talk to that day. It’s terrible, and it sucks. On the topic of this particular program — I am sorry that I was not able to accurately describe how much this program changed my life. If I had, maybe it would’ve helped guide you towards a different decision. I was incredibly apprehensive of the “no opiods” approach. And what should possibly be clearer is the fact that the GOAL is to REDUCE opiod use. It does not mean that the physicians and nurses with this program expect that you would never ever use opiods again. There are, obviously, exceptions and the program understands that. The point of the program, however, is to reduce opiod use. There are clinical studies that have studied the effects of long-term opiod use (Journal of Pain 2009, etc.). They have shown that this type of use can cause opiod-induced hyperalgesia (increased sensitivity to pain). The patient’s increased sensitivity creates a vicious cycle — the patient takes medication for the pain, but then the medication causes even more pain, which causes the patient to take more medication…etc.etc. I also wanted to clarify the difference between dependence and addiction. Dependence describes a physical reliance on a drug. Addiction is a compulsion or a craving to take the drug. Most people who rely on pain medication on a daily basis have some sort of dependence — it’s not anyone’s fault, and it’s just the reality of your body becoming used to a substance being there. Addiction isn’t a part of each chronic pain patient’s life, but it can be an issue for some. This is also nothing to be ashamed of as these drugs affect everyone in a different way, and it can be difficult to stop taking them when it seems they seem to make you feel better for a little bit. The Pain Rehab program helps with both dependence and addiction. We took classes in order to understand the difference, and if you felt that you needed to go to the separate addiction class then you were welcome. It was a very safe place for discussion among all of the chronic pain patients — we all learned a lot, and no one judged each other on experiences or points of view. Also, the Pain Rehab program has done at least 29 studies in order to better understand the needs and outcomes of their patients. Insurance doesn’t necessarily keep… Read more »

Unhinged

AMEN, Zyp!!!

Thanks so much for calling out these supposed “pain treatment centers” for being more concerned with addiction (potential, not even real) than pain (their whole supposed reason for being). It’s outrageous that pain patients are expected to pay for such a specifically un-serving “service”. As a previous commentator said,” It’s discrimination to force suffering when medication is available that makes it bearable.”

I would go a step farther and call it malpractice, even torture. “to force suffering when medication is available that makes it bearable.” Deliberately tortured is how I felt facing a doctor who insisted I take less opioids.

It seems that, at least since 9/11, this country has viewed the infliction of pain and helplessness on others as completely acceptable and compatible with American values.

This country used to be a place where the underdog could thrive, but now we’re just stepped on and used to make money for others.

R. Truitt

John Hopkins University Hospital has a similar pain program that I think is 2 weeks. I was offered it but declined.

Brenda Alice

I was forced to sit for a hour sales pitch about physical therapy,seizure medication, antidepressants, mediation as if listening to a CD would stop the sciatica. This was after they made sure my insurance would cover cost. It would not have fixed the broken disc that I had a fusion for a month after I got back. It’s discrimination to force suffering when medication is available that makes it bearable.

Jennifer

Well, call me a drug addict too, but since I am currently doing well with a regimen that includes opioids, I am pretty sure that I, personally, would not do a program like this. Since I found a doctor willing to help me a few weeks ago, my life has slowly become better with the addition of opioid medication to my regimen – I am up off the couch and up out of bed, I am becoming more active, I sleep better at night, and I don’t feel like I have to find yet another doctor and try yet another medication anymore. And of course, I’m in a better mood! I figure if I can do all this with my $10 prescription, then I don’t want to spend the money on a program designed to take that medication away from me once again.

g

Listen to your intuition. it may not be the thing for you at this time, but maybe in the future. Also, its good to remember that medicine is a business, usually a caring one, but still a business, with goals and objectives, and bottom lines. They sell a product, an image, a reputation. Just because their selling, doesn’t make it a good choice for us. I wish you the best, please keep writing.

Unhinged

Crystal,

First, I want to tell you that you are my FAVORITE chronic pain writer. I really look forward to your articles. I too, suffer from insane chronic (& acute) pain. I too, rely on opioids to control my pain & keep me from jumping off a bridge. At age 40, and after too many years of debilitating pain to count, I was sent to a wonderful geneticist who diagnosed me with Ehlers-danlos Syndrome. She, opioids, and the doctor who prescribes them, have saved my life. Literally.

I will tell you that from what I have heard about these (including the Mayo), pain programs, is that SOME people do well while they are there, not living in the real world & having tons of support, and proceed to fall apart from uncontrolled pain when they return home. At that point, it can be even MORE difficult to find someone, or convince previous providers to place you back on opioids. I can also tell you that from the many patients I’ve spoken to who have enterered these programs, NONE would do it again. I’m just being honest. It may be that the pain of Ehlers-danlos syndrome is unique, but I don’t think it’s just that…

Like you, if I could have figured out a way to “learn to live with my pain” or thrive “despite it” without the use of opioids, I would have done that already! To vilify an entire class of medications because the people who shouldnt use them, abuse them, is INSANE. If they offer you some relief from torture, and you are benefitting from them, what’s wrong with that?

It took me 40 years of surgeries, dislocations, suffering, suffering, trying every non-opioid class of medications, being misdiagnosed over and over again, PT, acupuncture, chiropractors, shots, invasive procedures, and even suicide attempts (YES… I even went THERE for relief), before I was sent to the right doctor for a CORRECT diagnosis. I am keeping my fingers crossed that you are eventually sent to the right person for an accurate diagnosis. In the meantime, hang in there, PLEASE keep writing for us, keep your awesome sense of humor, and know you are NOT alone in this fight. Also… Follow your instincts, and don’t let anyone talk you out of taking the only medication that has allowed you to continue to function. Even if your definition of functioning isn’t what it was before pain came to stay!

BL

You ask some very good questions. It’s a shame the people at Mayo had no answers.

Kurt W.G. Matthies

Crystal, I don’t know what their pain program is like, (although I can probably find out.)

Nurses often preach about the evils of opioids. This is how they’re trained. Fortunately, nurses don’t make decisions about treatments, and I imagine this particular breed of nursing bias does not survive long in the environment of any pain treatment program.

All pain programs have a goal of getting their patients off opioids. However, their main goal is to lower your pain level, first and foremost. Never forget this is primary. As you probably know, addiction medicine and pain medicine are entirely different fields of practice and have different goals. This is a pain program, not an addiction program.

Pain programs offer multiple modalities for pain reduction, and est their effectiveness. I like to paraphrase Vince Lombardi and tell people that pain management is “a game of inches.” Pain reduction using multiple modes is incremental and additive. For instance, if opioid medication reduces your pain by 2 points, a skeletal muscle relaxant or anti-seizure medication by another point, PT another point, and CBT yet another — that’s a potential 5 point drop in pain level. That takes a very miserable pain level of 8 down to a functional level 3.

Depending on your diagnosis, these modalities can include physical therapy, occupational therapy, acupuncture, pain counseling and education, behavior modification (CBT), meditation and yoga, use of medication (including opioids), interventional treatments, and as a last resort, you may be referred to surgery.

Concern and worry about being left out in the cold regarding pain treatment is real — I feel this myself, after over 30 years of being treated for pain. So please ask your questions before you enter — be obvious. “I”m managing pretty well right now on my current opioid regimen.” and “What if I don’t respond to treatment other than opioids.”

Express your fears and press for answers.

As for your insurance, this is a surprise. I’ve been using the services of a pain clinic for years. Insurance covers my visits. Perhaps the Mayo program differs, but why wouldn’t insurance cover a medical necessity?

Sometimes the secrets of achieving treatment approval lies in the skill and experience of the nurses and MAs who are doing the prior-auth with your insurance company. Many of these valuable team members have gotten procedures approved for me that others could not. A lot has to do with the ICD-9 code, and how your symptomology is described. My former pain doc was pretty good with presenting my chart to fit the procedural need.

However, I’ve also been refused (Cigna was a particular problem last year.) I challenged an initial denial for a particular RFA procedure, and when that failed, was going to ask for a full medical review by an interventionalist, but never got to that point — my insurance provider was changed and the new insurer paid for the procedure.

Too often we have to pushback hard against the forces of business that would deny us.

Best wishes in achieving your pain reduction goals.

Sounds like you know what makes you happy. And it sounds like you’re living with the pain, pretty well anyways. Sounds like you’d be better served to do what makes YOU happy. Sounds like you’re going to be in a program run by people who haven’t lived this life. Sounds like you should be running their program!

I remember, 2 years after I figured out I was sick of doctors and hospitals and pain clinics and went on the road and I met these doctors who had all these “fixes” for my spine and I was just smiling at them with that faraway, glazed over, “I don’t really care” look, and one doctor said to the others, “Don’t you get it? He’s out of the cycle! He’s been out for 2 years! Leave him alone and let him enjoy it!”

He was so right. I had never thought of it that way before but it was true. I had the right drug mix and I was enjoying myself and I wasn’t seeing doctors anymore. I was living life again! Now I only go twice a year to check on things. I’m so happy. Life is 50% at best, that’s OK with me.

Judi warner

You have a good head on your shoulders, very wise thinking Crystal. I have thought about doing exactly the same thing but I honestly don’t think I have it in me, not for three weeks, not even for three hours! I would need at least ten days to recover from the travel alone once I arrived. Your train of thought is spot on!