Pills for Breakfast: Extra Mayo and a Diagnosis

Pills for Breakfast: Extra Mayo and a Diagnosis

I went back to the Mayo Clinic for a second round of appointments, tests and anxiety last weekend.

Unlike last time, I kept this appointment pretty much under wraps. No pre-trip column, no Instagram selfies on the way there, and no Tweets from the waiting room.

Last time, when I came home without any answers, I felt like I let so many people down — and I didn’t want to endure that all over again. Plus, it’s really hard to process the idea of 137 people telling you they’re praying for you, and then having nothing happen.

So yeah, only my immediate family and a couple of my very closest friends knew I was going back to  the Mayo.

And yes, last time I was there, I thought I had left for good. But fate had other plans for me.

450px-Mayo_Clinic_Rochester_Gonda_w_trees_3890pThrough the magic of the Internet, I met an amazing young woman who also deals with chronic pain and actually works at the Mayo Clinic. Not only that, but her dad is a doctor there, and as crazy as it sounds, he actually specializes in chronic pain patients. She suggested I try one more time and she even helped me book an appointment with him.

So, a few days before Labor Day weekend, my mom and I loaded up the car and made the six-hour drive to Rochester, hoping against hope that things would be different this time.

And it was different. Right from the start, the very first appointment was different. My new doctor spent two hours with my mom and me in the initial visit, and he even looked through every single page of the huge purple and blue medical binder I’ve been lugging around for the last year and a half.

He ordered some more tests, and said he’d check back with us at the end of the visit. So a bone scan, 20 blood tests and a CT scan later, we were back in his office.

All the tests came back normal, which is supposed to be a good thing, but instead feels like a huge let down when you’re dealing with invisible pain for almost two years.

However, this new doctor wasn’t deterred by the lack of results. And he came up with a theory, which seems to make the most sense of any of the theories I’ve heard so far.

Basically, he thinks it all goes back to my gall bladder, which I had removed in 2009. Before that surgery, I had multiple gall bladder attacks, all of which caused extreme pain in the exact area where my current pain is. He thinks that between the attacks and the surgery, that area of my body was extremely damaged.

And then, one day back in February 2013, when I woke up with random pain on my right side, something related to the surgery either tore or stretched weird or something, causing the initial pain.

The CT scan showed that whatever happened is probably healed by now. But, since that region of my body is so jacked up, it was enough to cause something called “central sensitization.” Apparently it’s similar to phantom limb pain, in that even though the original cause of the pain is gone, the brain still thinks there’s pain there.

Look, I’m not going to lie, I was skeptical at first. I mean anytime someone says your pain is caused by a misconnection in your brain, it’s hard not to hear, “It’s all in your head.”

But, the doctor assured me that’s not what he meant. The nerves in that area of my body are, in fact, in extreme pain, and as far as my body is concerned I might as was well be getting hit with a real-life baseball bat every 20 minutes.

So what’s the solution to all this? Well, unfortunately, there’s no magic pill I can take to make it all better.

I could get a couple different types of injections to see if they can help stop the pain signal long enough for my brain to disconnect the pain loop. I actually got one while I was there, and it didn’t do anything for me.

Which leaves me with the one place people can go when they have chronic pain and no easy fix — the Mayo’s three-week Pain Rehabilitation Clinic.

Yes, it’s the same three-week clinic the neurologist I had originally met with at Mayo had recommended. And yes, I probably could have saved myself a few thousand dollars if I had just listened to her and signed up for it after my first round of appointments, instead of insisting on seeing another specialist.

But I wanted to be sure. I wanted to know, without a doubt, that I didn’t have cancer, liver damage, or a crazy alien growing in my rib cage. I wanted to be absolutely positive that there wasn’t anything broken that could be fixed with a simple procedure.

And now, I’m sure.

Yes, I’m worried about taking the time off work. And no, I have no idea where the heck I’ll stay for such a long period of time or how I’ll pay for that. I can’t even begin to think about what the program itself will cost me, even with my insurance.

Plus, one of the major focal points at the clinic is getting patients off their opioids. I can tell you from personal experience that, for me, going off opioids usually ends with lots of pain and a trip to the ER.

But this doctor tells me that the clinic really could help me get a lot better. He tells me that I would have a team of doctors, psychologists, physical therapists and others who could work with me and help me get to the very best place possible — be that completely pain free, or just being able to live life like someone who is completely pain free.

Plus, he wasn’t the only one singing its praises. His daughter, the one I met, has actually done the clinic and loved it. She came through it better able to handle her own pain, and her only regret was that she wished she had done it sooner.

So I’m probably going to do it. And, as my mom says, if nothing else, I can always write about it.

Crystal Lindell

Crystal Lindell

Crystal Lindell is 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.

There are 3 comments for this article
  1. Kim Miller at 2:23 pm

    Crystal, I wish you all the best in your journey. I would like to thank you for liking out page and I would love to check out your blog. ” The Only Certainty is Bad Grammar”. I am a grammar nut, myself.

    That being said, I think what your doctor did for you sounds like a dream these days. I have personally never had a doctor spend two hours in a room talking to me! I did spend 5 hours waiting for one once. I think the advice sounds plausible and I hope the rehab center is everything you are hoping it will be.

    Good Luck and best wishes,
    Kimberly Miller

    ***** SEPTEMBER IS PAIN AWARENESS MONTH ******

  2. Myron Shank, M.D., Ph.D. at 7:12 am

    “Central sensitization” is the correct term, but it is one that I do not like. It implies that what you are experiencing is only an increased sensitivity in the brain to an actual stimulus somewhere else in your body. That hardly fits things like “phantom limb” (or, in your case, “phantom gall bladder”) pain–or many other forms of chronic pain.

    In a sense, all pain is “in your head,” because, even when it is normally provoked, by a stimulus, it is still an interpretation in the brain. Chronic pain can be thought of as pain that has a learned component. It is a sensation that is either provoked abnormally, or it occurs without any stimulus at all. The more intense the pain and the longer it occurs (the longer and more intensely your brain “trains” to feel it), the “better” you get at feeling it, until it develops a life of its own–like a tune that you cannot “get out of your head.” The only thing “weird” about this phenomenon is that so few people are willing to accept the obvious and treat the commonplace (up to 1/3 of Americans have chronic pain) as bizarre or psychopathological.

    Most chronic pain patients either experience pain out of proportion to what would ordinarily be expected or pain without any identifiable ONGOING cause. In fact, pain that lasts beyond its cause is one of the definitions of “chronic pain.” Since all pain is subjective, in the first place, chronic pain is just as “real” as acute pain. The difference is that chronic pain, in whole or in part, is “noise,” rather than “information.” In other words, you hurt, but that does not necessarily mean that you are being hurt (That is a play on the word, NOT a denial of your pain.).

    The three-week course sounds like an intensive retraining of your brain, either to not experience the pain, or to ignore it. Just accepting the fact that, at this point, your pain most likely is “noise” without any “cause,” other than your history of experiencing it, may go a long way toward de-emphasizing your very real, but inappropriate, pain. As impossible as it sounds, right now, learning to change your focus away from your pain can help it to fade into the background, like a constant noise that you eventually ignore.

    I hope these explanations help.