Mixed feelings about our Mayo Clinic visit….

We loved the specialist we saw there, an infectious disease neurologist. She spent a full 2 hours talking to us, did the most thorough neuro exam on Chris to date (and he’s had about 15), and even though she’d read all of his medical records, sat down and asked him to start from the beginning – his very first episode, and to tell her everything in his own words. She took about 4 pages of notes in those 2 hours, as she asked about everything under the sun – from his symptoms, to his lifestyle, his family medical history, etc etc etc.

Then she said she had been talking with her nurse to get a bed for Chris at the Mayo Clinic Hospital in Phoenix. She was on call all weekend and wanted to expedite his treatment by getting tests run right away. We were ecstatic. There was only one little thing….her nurse had said something about there being an insurance issue???


As we discovered this week, the Mayo Clinic is out of network for us. Even though we have Blue Cross Blue Shield, we have purchased it privately (as neither one of us have insurance through an employer), and only specific groups of BCBS are covered at Mayo. Ours is not.

We told the doctor that we wanted to do whatever it takes to find out what’s wrong with Chris. We’re not concerning ourselves with costs at this point.

But the doctor was frank with us. She said she wants to start with 2 tests:  a repeat lumbar puncture (spinal tap) and a vessel study (to look at his vascular functioning). But pending results from those tests there could be repeat CT-scans (she specifically mentioned looking at the abdomen and pelvis), another MRI, perhaps a biopsy….we’re talking about tens of thousands of dollars of tests paid out-of-pocket. She told us that, if it were her and her husband, she would go back to Tucson. That was her final recommendation for us. To come back home. She said that since we have a neurologist here who IS in-network, that we should continue to work with him.

I was nervous. Our neurologist didn’t know what the problem was. That’s why we were at Mayo in the first place! She assured us that she would be in ongoing communication with him to work to find a problem. However, none of the tests she would recommend are Mayo-specific – they can be done anywhere. So instead of going into a great deal of debt, she suggested we have the tests done where our insurance will cover them, and to continue working with our neurologist who can consult with her as needed throughout the process.

So here we are.

I’m frustrated that Chris could have been in the hospital already, getting tests done already, and being treated by some of the world’s best doctors. I’m frustrated that instead, we’re back in Tucson where things will move much more slowly and we will be working with a team of doctors who had already given up on us – left it to the Mayo Clinic and basically said they were stumped.

But I certainly understand the financial aspect as well. Its just terrible to have to make such important medical decisions based on the bottom-line dollar instead of the patient’s best medical interest.

So we have to wait until Monday. Then we’ll call our neurologist, try to get an appointment this week, and see about setting up these tests. At this point we’re not sure if they’ll be done as a hospital in-patient or outpatient. We have learned that outpatient, although perhaps more comfortable because you get to be living at home, takes MUCH longer to schedule. When you are in-patient, they order a test and it is done in the same day. So we’ll see what happens.

Ultimately, the specialist was still unsure of what is wrong with Chris. She wants the repeat spinal tap to see how his infection is looking – getting better? staying the same? getting worse?

And the vessel study has been recommended because some of his tests suggested inflammation in his veins and the doctor wants to determine whether the inflammation is localized in a specific area, or is global all over his body. Pending the results of these tests, she would follow up with additional tests.

I’m really not sure how things work from here. Even if we’re running tests in Tucson, if the doctor continues consulting with our neurologist here I’m sure there will still be fees. I have no idea how that works payment-wise.

We also have no idea when these tests will be performed, how long they will take, how many follow-up tests there will be, etc etc etc. I suppose we can talk more to our neurologist about it this week. It’s just terrible as we continue to march through the month of December to have no idea what our holiday plans will look like, where we will be, etc.

So that’s all for now on the mystery illness. Still a mystery.