A Puff of Smoke

For the beginning of this story, I’ll refer you to these posts: Epic Migraine, The Results Are In, & Having My Head Examined.

First of all, let me remind you that I was dead set that whatever happened in August was not a migraine, regardless of people telling me “pregnancy makes migraines do funny things.” It’s my uneducated [medically] opinion that I had a mini stroke [TIA].

I saw Dr. Bae yesterday. He said it’s “very probable” that I have Moyamoya Disease, the first words out of his mouth after that were, “This is something I’m not able to handle, and we cannot do the surgery in Delaware.” He wants me to have an angiogram done, and he wants me to get copies of my MRI and MRA and have a consult done at either Columbia in NYC or Johns Hopkins in Maryland. M did a little research and found that the number two doctor in the United States who is familiar with Moyamoya is located in Boston. The only reason I’m not fighting to see the number one doctor right now is he is located at Stanford University in California. It’s purely a proximity thing, and if I think I need to see him after going elsewhere, I’ll do that.

So what’s Moyamoya mean? Essentially, the blood vessels leading to my brain are constricting. It’s progressive, and the only real treatment is surgery. The good news is, it’s not so far gone that I will need the surgery immediately. Often, one of the early symptoms of Moyamoya is a TIA. Numbness and paralysis of the extremities is also an indicator.

If you have questions, I’ll answer them as well as I can, but the truth of the matter is Moyamoya is rare and Dr. Google couldn’t give me much information. Even my doctor didn’t have a lot of information to give me. He was, however, rather impressed with the amount of research I’ve already done.

5 Replies to “A Puff of Smoke”

  1. Oh my goodness! I hope that you are able to see the dr in Boston soon. You will be in my thoughts. ((hugs))

  2. You have two friends here in Boston who are willing to do whatever you need and will be here for giant hugs. (And we have a second bedroom if you want, too!)

  3. I’m so sorry to hear that, but also happy to hear that you’ve been diagnosed and they can, hopefully, do something about it to help.

    All the best!

  4. Goodness! Well, you sound like you have a plan. You will be in my thoughts. Please keep us updated. And take care of yourself and those boys!

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