"Suffering the Slings and Arrows of Outrageous Fortune"


So, bright and early the morning after we went to Cincy, we saw the neurologist- Dr. Parnell. Again, I was concerned that a ‘mere’ neurologist would not be able to help us much and would basically be a waste of time. Dr. Tinkle reinforced my impression, so I wasn’t terribly hopeful.

Imagine my surprise when Dr Parnell took us very seriously without any pushing on our part. We mentioned the EDS and said we had been to the geneticist the previous day and got the diagnosis. She said, ok, what did he think about her headache? We said, he is concerned about cranial instability. That was really all it took and she was on board immediately and we were off and running.

She was very concerned about the blurred vision when Em turns her head. (This is a new symptom or at least she just mentioned it to me Sunday evening. When she turns her head to the right, her left eye goes blurry. When she turns her head to the left, her right eye blurs.) The concern she and Dr. Tinkle share is that the arteries could be compromised by the cranial instability – in other words, the laxity in the neck joint could be cutting off the blood supply to her brain causing blurred vision, dizziness, etc.

The only question was how to ‘see’ that with imaging techniques. Maybe a positional CT scan with contrast, maybe ultrasound, probably more MRIs. She was going to make some phone calls to radiology and her colleagues to see how best to deal with it. In the meantime, she agreed with the cervical collar and prescribed a course of steroids. A tapering dose for 18 days – 3 days each of 6 10 mg pills, then 5, 4, 3, 2, 1. Seems like a fairly high dose… I think she is wanting to see if the prednisone helps with any compression on the brain stem, etc. I am really glad Dr. Parnell is taking it seriously but this prescription gives me an understanding of how serious she views it. It is all terrifying when I stop and think about it.

Em is not thrilled with the prednisone and I don’t blame her. She is so nauseated that taking pills is not easy and there will probably be some serious side effects. She has flexeril which will hopefully counteract the sleeplessness; not sure how the increased appetite will work with the severe nausea but if it stimulates her appetite it could be a good thing. She is feeling much looser in her joints and feeling more pain than normal. So far she is managing to take the pills but we may need to get a prescription for nausea.

We still need to address the possibility of chiari and the related stuff, but we got  good start on Tuesday and feel like we are in good hands. Having the diagnosis really helped and now we can hopefully address these issues and get something done to make her feel better.


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