Thursday, August 21, 2008

Quick Update

Originally published in Dan's Life on August 19, 2008

No posts in a while. I've been (and continue to be) quite busy at work, finishing up all of the outstanding projects here in MA and concurrently planning for the move to CA.

I went to see a surgeon on Monday. It seems that the guy was not up on the latest research into Chiari Malformations. He deemed (after looking at my MRI results for much less than 5 minutes) my case "borderline" and gave his opinion that I should not operate. I personally disagree with his assessment for several reasons and I remain very convinced that Chiari is the source of my medical problems, which still persist after 8 long months. Every symptom I've suffered is readily explained by Chiari, and both radiologists who have seen my imaging (one for the CT scan, the other for the MRI) concluded that I had the malformation. There was no reporting about a "borderline" case. I've read plenty of sad stories online of people in a similar situation, with persistent symptoms and misinformed doctors. Fortunately these stories usually end in the person finding a qualified physician and getting the help they need.

My next step is to get my imaging forwarded to The Chiari Institute on Long Island, who agreed to give me a preliminary diagnosis. The frustrating thing about these latest developments is that I had some hope of surgery and resolution before the move out west, but given the lead time on finding a new doctor, meeting with him or her, and scheduling a surgery date, a pre-move procedure seems completely implausible.

I'm managing the problem okay. I've been running almost every day lately, though the shortness of breath severely limits my former capacity for distance. I attempted a 4.6 mile run yesterday and simply could not make the last quarter mile. I ended up walking the rest of the way. All I can do is continue fighting to stay healthy and continue searching for the right doctor.

Comment from the original post:

lace1070 said...

Dan ~ I found your blog from a google update when people blog about chiari. I was diagnosed in 2006 and have a blog with a lot of info and links about chiari ~

Getting in to see the docs at TCI is worth the wait. I put total faith in them and will have my decompression in December. Hang in there and keep learning more about Chiari ~ knowledge is your biggest weapon against Chiari! Hugs ~ Lace

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