My search, my Journey to the Mayo Clinic
My search, my Journey to the Mayo Clinic
Preparing for the Mayo Clinic
When I last wrote, I mentioned that I had contacted two doctors who were said to treat this condition. Unfortunately, neither of them replied. So, I began reading medical journals and reached out to several of the authors of studies I found. Two or three of them responded, advising that the best place in the country for this kind of case is the Mayo Clinic. I also found several articles written by Mayo Clinic doctors, but the clinic’s website doesn’t provide a way to contact them directly.
So, I called the clinic and scheduled an appointment. I was honestly in shock — I had imagined flying in one day and out the next, but they told me to plan for a stay of five to seven business days, and that was before I even spoke to a doctor. My insurance covers care at the Mayo Clinic, but not travel, lodging, or food while I’m there.
I had hoped they would review my chart and order any needed tests before asking me to come, but instead they’ve requested that I collect all my chart notes, labs, and images myself and bring them to the appointment. I’m working on gathering everything, but OHSU has made it difficult. Oregon state law caps the fees for medical record copies — $30 for the first 15 pages, $0.50 per page for the next 30, and $0.25 per page after that — and I have no idea how many hundreds of pages my records include. Fortunately, there’s a loophole: there’s no charge if another institution requests the records. I now have a letter from Mayo requesting that I bring them, and I’m hoping OHSU will accept that.
In the meantime, I’m pulling together as much documentation as possible — writing my own case summary, building a timeline, collecting photos of me from before the condition began, and even creating a video demonstrating my symptoms. I’ve recorded clips of myself walking when I had balance issues, showing facial twitching, and plan to capture footage of how I lift my feet.
I’m considering getting an iPad 2 and loading all the information onto it before I go, so I can easily access everything during appointments. OHSU uses electronic medical records, but each time I visit, the doctors can’t view my images. I’ve started bringing my own copies on my iPhone, but the iPad would make that easier — plus, I could use it to work while waiting for appointments.
I’ve already ordered the iPad, but I’m still debating whether to get a used iPad 1 instead. It would cost about $200 less, though it wouldn’t come with a warranty, would be slower and heavier, and, as my father says, might be “someone else’s headache.” Still, it’s a tough call — penny wise or penny foolish, I’m not sure which.
Once I finish the video, I plan to post it on YouTube.
Odell
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