You don’t know me. I came across one of your desks at some point, sure, but that wasn’t really me.
I’m 22 years old and I’ve never had my heart broken by a boy, but I can say without hesitation that I’d trade that for the heartbreak of being rejected by the top hospital network in the country.
I want to tell you about the person you half-heartedly decided you couldn’t treat.
The only information you have is my name. You know that I have chronic migraine. You know that I experience bi-lateral head pain, nausea, vertigo, aphasia, light sensitivity, and sound sensitivity. You know that I am disabled. You know my current medicine regime made up of 1 preventative treatment and 3 alternating abortives.
How a decision could be made on this tiny fraction of information is beyond me.
And I’ll actively ignore the reports that individuals with Medicare/Medicaid don’t get priority like those with Commercial Insurance that lines your pockets.
My list of who I have seen isn’t as extensive as some, but their resumes certainly are.
My current neurologist, who was also my neurologist in high school is the most highly qualified individual I have ever met or had the honor to work with. He isn’t dismissive; he prioritizes coordinating care with other specialists and non-traditional care; and most importantly, he admits when we’ve reached a point where not much more can be done.
I’ve seen a neurologist who has thrown away my entire treatment plan and told me that my opinions of my care plan are invalid. He came highly recommended. His care (rather lack thereof) landed me in the hospital on multiple occasions.
From there, I saw a top Headache Specialist in the Milwaukee Area. Of the 484 headache specialists in the country, I saw 1 of them. He got me approved for the first CGRP medicine. He had me start DHE infusions – infusions that I failed because I didn’t have access to inpatient infusions and didn’t have the support to access outpatient infusions consistently. From him I learned about Medication Overuse Headache and we actively put an end to the overuse of all abortives. He was incredibly proactive with my care, took notes on suggestions from other doctors and allowed me to make educated decisions on taking anxiety or depression medications as advised by my primary care doctor at the time.
I’ve been to MUSC’s Advanced Migraine Surgery Program to be evaluated by their top neurologist to determine if the surgery could be right for me. Their exact words were that I was a “textbook Migraine patient” who had followed the exact steps for various medicines, treatments, and lifestyle changes that are taught as proper procedure for headache medicine. My response to Botox treatments would demonstrate that I was not an ideal candidate for the surgery.
Aside from doctors, a lot of work has been put in to getting better and at the very least effectively managing symptoms.
Being in severe pain for 66% of the time is not what I consider a managed condition.
I’ve successfully reversed my light sensitivity – photophobia – to the point where only harsh fluorescent lights will trigger an attack. This is something I’ve done on my own with exposure therapy, starting with simply being in the sun for an hour a day, slowly increased to being able to have natural light pouring through my house the entire day.
I’ve done every elimination diet you can think of. Now I stick to mostly raw, unprocessed foods to ensure that only the best nutrients are going into my body.
I’ve implemented vitamins and supplements on and off over the years and had testing showing my vitamin, nutrient, and heavy metal counts are all in the correct place.
I have implemented yoga and stretching into my daily routine to ensure that my body stays in motion as much as it can tolerate.
I’ve read more medical journals, deep dived into more clinical trials, and analyzed more hypothetical research than is taught on the subject of migraine and headache in med school.
Mindfulness techniques, self awareness, and journaling are an active part of my lifestyle.
Other therapies like regular massage therapy have helped in the past, but have become obsolete with the pain at the severe level constantly.
You see there’s so much you should know.
At 17 my entire body shut down, forcing me to be hospitalized and given fluids because my body had stopped breaking down foods and I was severely dehydrated. I missed the first Packers game that season, which if you know me, is pretty serious.
At 18 I was hospitalized multiple times in a row, forcing me to leave my job and start in on the complex medication trial and error game. Some of those medications also forced me to be hospitalized.
My roommate when I was a freshmen in college hated me because I wouldn’t go out and party with her and didn’t care that I couldn’t consume alcohol on the new drug I was trialing. I almost failed calculus – a class I’d already aced – because of migraine. This began my year long fight for accommodations.
At 20, I had to choose between my job and continuing my education because I only had 2 1/2 functional days a week (sometimes). But instead I chose to move home and apply for disability because having minimal function for 2 days and recovering for 5 each week isn’t viable in the long term and I had to accept the severity of my condition.
At 21, I was recognized as medically disabled by migraine. They determined that the disabling nature of my condition began when I was 19.
At 22, I have to once again move across the country because I’m too sick to live on my own and the prospect of maintaining health insurance is more important than any feelings I may have.
Which brought me to you.
This slim chance that I’d be mere hours from the most advanced care that exists gave me hope. I mean, The Migraine World Summit will be happening in a few short weeks, and The Mayo Clinic will be highlighted as the best place to receive care. It’s where experts work together on the most difficult cases, combining a whole-body approach that combines medical intervention, therapies, and lifestyle changes to create an individualized care plan for patients.
In the words of your rejection email: “appointments are prioritized based on the likelihood that Mayo Clinic can provide additional tests or treatment options that are beneficial or significantly different from evaluations you have already received.”
If you cannot offer me care, then who can?
What is left for those in my shoes, disabled, unable to move forward with our own doctors unless new treatments are approved, who have tried everything known to medical professionals?
I am 22 years old and you have made it clear that I am a lost cause, unworthy of meeting with your highly sought after doctors.
So Dear Mayo Clinic, you are wrong. If migraine doesn’t even show up on a test, why rule me out because I’ve had all the tests? If medications aren’t effective for everyone, why rule me out because I’ve tried most of them? I’ve certainly never received a magnesium infusion. What about Ketamine Infusions? Acupuncture. Herbal Medicine. Cognitive Behavioral Therapy. Floatation Therapy. Anything. You’re telling me I can pull these out of my ass, but you can’t offer anything substantially different from my “current” care that you have no knowledge of to begin with?
One thought on “An Open Letter to The Mayo Clinic…”
Ugh this hurts to read. I wish they would help you. You need it so bad and have such a good case for them. I’m so sorry!!
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