Search topics

How interesting that one of the search topics someone put in that lead them to my blog was “cowden brain”. Yep! That’s me. Cowden’s Syndrome with a brain tumor kicker. Gag.

Mom & I met with Dr H and he told us there is no 3rd tumor. Whew. Freaking whew. While LDD is rare, 2 is even more rare. Can you imagine a 3rd? Stop it. Sit down right now! He said with LDD it’s not so much watching for “more to pop up” (my quotes added) it’s monitoring the sizes of the ONES you have. He said these are stable. Which is fantastic!

He looked at my incision and Mom told him it’s still rather pink/red. Guessing because Dr K had to go back in 2x, dammit, but Dr H theorized over more time it would blanch out. Then I had him feel the side of my head near my temple as I’ve recently noticed a huge (to me) indentation divet thing there. He explained it in medical lingo that it was normal for the surgeries. Mom reminded me I had staples and some other things placed all over my head & I’m missing hair right in that area too. Just more par for MY course. Apparently.

This week I only have 1 medical appointment with my neurologist. I’m hoping I can get off the Topamax & Gabapentin. Their purpose was used & I’m thankful I’ve had no more horrific headache since last summer (and no more hospital stay with it!) but I think they have run their course. While I’m more acutely aware of ANY headache I get now (and I’m getting dull ones almost daily, but that could be from: heat, dehydration, hormone changes, the surgery itself, etc.) they are manageable. Which is what I hear about Cowden’s. How you figure out how to manage it.

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4 thoughts on “Search topics

    • He said about 6 months and it looks like it will be right around December or January. Which will be the time of the breast MRI too. I’m already thinking about that! GAH!

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