My Visit to the Mayo Clinic.

MC-1After months of hard work trying to obtainn medical records and test results from hospitals in both New Jersey and Washington state. I was finally able to secure my appointments at the Mayo Clinic, book a hotel and flight to Rochester, Minnesota. It was a frustrating process that took months.  A frustrating time where I often questioned whether or not I would be around long enough to to walk through the doors of the storied institution.

Due to the fact that my first appointment was at 7:30 am Tuesday morning. My wife and me flew in on Monday, which gave us an entire day to wander around and explore an area we had never been before.

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Though I didn’t feel that going to the Mayo Clinic would help me find any new answers or a magical cure all for the progressing issues I’ve been experiencing. I arrived open minded, knowing that I would be seeing the very best doctors and getting the kind of concentrated care I had never before experienced. I’d also be giving my wife the peace of mind she more than deserves.

From my first appointment on Tuesday morning. I felt as if I was experiencing a level of care like I had never before seen. The answers of my questions were addressed and answered with a a great deal of detail and explanation. Before my first appointment MRI B-1ended, the initial three I had scheduled had morphed to six and by the time the days second one was over, I had learned more about my condition in a few hours than I had in the two years since being diagnosed.

As the week wore on the amount of appointments, test and waiting began to wear me down both physically and emotionally. After a blood and urine test, an MRI and a CAT scan the doctors all agreed that the calcification my my brain was creating my balance and speech issues, but questioned whether or not a I had FAHRS. Though not  concluded, it seems as if the radiation for a brain tumor I had as twelve year old might be the culprit. Where I had felt so positive during my first couple of days there. the last two days there left me with a much better understanding of my condition but so many more questions than I arrived with.

What’s most bittersweet about all this is I will be returning for another round of appointments and tests in late September. Not to be negative but, I sometimes with that the original diagnosis and death sentence I received (a month to live.) when I was twelve, would have come through. I, nor my family and loved ones, would have to experience and suffer from all the bullshit that followed. And while I’d describe my trip to the Mayo Clinic as very positive. I wish I’d be returning home with a more detailed and defined outline of things.

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Doctors Visit

As I sat in the neurologist’s office going over recent tests we hoped would shed some light on my worsening speech patterns and balance issues, I tried to control my emotions as I felt myself choking up. As he shared the results and his conclusive diagnosis. I found myself struggling to hold back the tears and the snot bubble that was massing in my right nostril, Suddenly, as I felt my wife’s hand tighten on mine. I turned to her lovingly only to notice the tears rolling down her cheek.

The answers we had been hoping for were not there. This was a month that featured X-Rays on my shunt. An MRI and CAT Scan on my brain and enough blood work to make a vampire foam at the mouth. It turned out that my symptoms had nothing to do with a recently discovered meningioma brain tumor residing on the opposite side of the brain where my original pineal tumor (The one doctors deemed as terminal. Giving me a month to live at the ripe age of twelve.) had remained or my 2008 stroke that was brought on by a build up from the radiation I originally received to shrink said tumor. Issues that could be easily understood, treated and easily removed.

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 Back in Jersey during a March, 2017 seventy two hour EKG.

Instead, what they found was a rare, often genetic neurological disorder known as FAhr’s Syndrome. A disorder that has no cure or standard treatment. One that progresses over time, but won’t kill you. After the doctor went over each test with visual descriptions, he turned to us and said, “I wish I had better news for you.” A term which is easily translated to “Sorry, but you’re fucked.” Having amassed a stockpile of sarcasm and dark humor over the years, I asked, “If I drop you a few extra dollars for your next trip to the local strip club, would you prescribe a toxic cocktail that can put an end to my misery?” Instead of agreeing to my request, I was referred to physical and speech therapists. Complete with a follow up date and the name/number of a social worker.I was all but dismissed.  The worst part of it all, at least for me, was seeing my wife cry. We’ve been through a lot together (My 2002 shunt replacement, 2008 stroke, my struggles and sleepless nights due to an ongoing struggle with Gastroesophageal reflux disease as well as my numerous trips to the Emergency Room.) and she’s been at my side during every bump in the road. She’s a loving, supporting and very strong woman. Yet, I’ve only seen her cry twice in all our years together. Both being times when I was hospitalized or being diagnosed with some kind of bullshit.

While it’s hard for me to properly articulate what I’m about to say. Life has taught me that there’s nothing I can’t handle. I’ve seen a lot and I’ve been through more. We are all a lot stronger than we ever give ourselves credit for. Though in my case, hearing stories from friends and loved ones who were around to witness some of the things I went through was more than I could take. More than I would ever want to burden anyone with. I don’t know if I ever told anybody this, but I often feel a tremendous sense of guilt for what I put them through. In getting the news of the next gift from God. I finally shared my thoughts of how I wished the original 10/11/1982 diagnosis of “I’m sorry, but there’s nothing we can do. Your son will most likely be dead within the month.” Would have been fulfilled. Because, somehow, their saving me led to a lifetime of related bullshit that I couldn’t shield the people I loved from.

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That’s me on the right wearing a Yankees team jersey.

While my rant was not received well by family, friends, or my doctor. It was something I had been feeling and wanted to be honest about. In retrospect. I’ve lived a charmed life. One that’s granted me love, happiness and enough positive experiences to look look forward to and back on for years to come. All the negatives are just bumps along an otherwise smooth road.

 

Fahrs Syndrome Information

American Brain Tumor Association