The Mayo Clinic doesn't always have all the answers

This post is by no means meant to discredit the Mayo Clinic. They are an incredible medical facility that helps thousands of patients every year. My point is that all doctors miss things, no matter how good they are. Just because one doctor says “there’s nothing else wrong with you” does NOT always make it true.

My trip to the Mayo Clinic in 2017

About 1 year ago, I traveled to the Mayo Clinic to receive further testing for my POTS. My family and I wanted to make sure that there wasn’t an underlying cause that could be more easily treated and addressed.

We were very impressed with the hospital and how efficient they were with testing, appointments, and procedures.

The doctor I saw, Dr. Coon, was a very knowledgeable neurologist that seemed to know POTS better than any doctor I had previously seen.

I had so many medical tests done that week. We were sure if something else was wrong, they would find it. When they weren’t able to identify any other significant medical issues, we were slightly disappointed. We thought well, they must be right--it’s just POTS. We were later proven wrong (I have since been diagnosed with a sleep disorder called UARS and Intracranial Hypertension).

What the Mayo Clinic prescribed

The treatment plan they gave me was very similar to what I was already doing: beta blockers, increased salt, and an exercise program. Dr. Coon felt very strongly that I would be feeling much better in the coming months. We left in high hopes that these small adjustments would make a difference for me.

After following these instructions, I got worse. The summer hit, and my health began to decline, yet again. I wasn’t able to tolerate exercise anymore, and things continued this way for over a year.

My sleep disorder

My family and I continued to research my symptoms and condition, even though we were told nothing else was wrong with me. My dad came across a blog post of a woman with POTS that was diagnosed with a sleep disorder called UARS, and had a similar story to me. Once that condition was treated, her POTS was completely gone.

If you’re interested in learning more, here’s the link to her story: http://www.potsuk.org/stories/58

I found a sleep clinic nearby, and sure enough, I was diagnosed with the same condition, called UARS. It’s similar to sleep apnea, and is common in young, thin females that wouldn’t typically “fit the profile” for sleep apnea. They started me on CPAP therapy, and I was very dedicated to that for months. It didn’t improve my symptoms, unfortunately.

So the search continued.

My Intracranial Hypertension (Pseudotumor Cerebri)

As I prayerfully researched my symptoms, I came across a video of a young girl that also suffered from POTS and severe headaches. As I listened to her story, I thought, “that’s me.” She was diagnosed with a CSF leak, and after she was treated for that, her POTS went away.

Here’s the link to her video: https://www.youtube.com/watch?v=ZN9iYgYAfLk

I continued to research the connection between POTS and CSF leaks, and became convinced that this was my problem. I had all the symptoms.

Here’s a great video by a doctor at Stanford where he talks about the connection: https://www.youtube.com/watch?v=QyvWxobqKrc

Because there are only a few teams in the country that treat and diagnose these spontaneous spinal fluid leaks, I traveled to Duke in North Carolina to be evaluated.

They started with a spinal tap and CT myelogram. The spinal tap actually revealed that I had a very high intracranial pressure of 34 (normal ranges from 6-18). The doctor came in and said, “you have a damn high pressure.” It turned out that I have the OPPOSITE condition than we had expected. Apparently high pressure in the brain often presents with the same symptoms as low pressure/CSF leaks.

I don’t have a leak, but I have Intracranial Hypertension. The other name for this condition is Pseudotumor Cerebri, as the condition mimics the presentation of a brain tumor (though you don’t actually have a tumor, of course). I’ll plan on writing more on my new diagnosis in a separate blog post.

Never give up on finding answers

My point with this blog post is to never give up hope in finding answers for your health. No doctor, hospital, or medical facility is perfect. It’s still hard for me to believe that the neurology department of the MAYO CLINIC failed to recognize that I have a brain condition. They never even thought to test me for IIH. Crazy, right?

Never give up hope, advocate for your health, and do your own research. Don’t be afraid to ask for medical tests that doctors don’t suggest--you never know, you just might be the one to find out what’s wrong with you!

I hope this list was helpful! As always, I'd love to hear your thoughts and comments below :)

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Other Posts you May Enjoy

5 tips for overcoming boredom with chronic illness: https://gonetopots.com/5-tips-for-overcoming-boredom-with-chronic-illness/

Why POTS is a Big Deal:

https://gonetopots.com/why-pots-is-a-big-deal/

The thought of never getting better:

https://gonetopots.com/never-getting-better/

Some thoughts on POTS:

https://gonetopots.com/some-thoughts-on-pots/