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snarpI'm sorry, I am being weird and inconsistent about what I blog about.
1) When I mentioned a Thing that got taken out on prospitianescapee yesterday, I was talking about the meningioma I had removed a few years back. The pineal Thing is still in my head.
2) The pineal Thing is going to stay in my head. (I don't know how to feel about that yet!)
The appointment I had in Cleveland on Tuesday was me getting a second opinion about whether they wanted to try and get at the pineal Thing or not. The answer was "no" - it's too small and almost certainly just a cyst. The chiari/cerebellar ectopia thing was of even less concern to her, because the overreach is so tiny, and anyway the only treatment for it is removing part of your skull. Too drastic!
(I'd already seen a local neurosurgeon, who said the same thing, but I didn't trust it coming from him - he hadn't read my chart or looked at my records and seemed in general pretty out-of-it. My mom was with me in his office, and at one point I think he even forgot which of us was the patient. Cleveland Clinic's where I got the meningioma removed, so I went back there.)
What the Cleveland neuro advised is just yearly MRIs + battery of neuropsych tests to quantify my vision/hearing/motor issues. This doesn't solve the problem of me feeling cruddy all the time, but at least we have eliminated an explanation? Science. Next steps are hassling an endocrinologist and gynecologist about whether I have, like, endometriosis, or an earwig that crawled in my ear and made it all the way to my thyroid.
So, I do not actually need brain surgery again. Disappointingly? SHOULD I BE DISAPPOINTED OR NOT?????? I am disappointed that I do not need brain surgery, regardless of the rationality of this. I really wanted to cut the problem out and feel better again, that was pretty okay, that other time I did that! A validating experience.
1) When I mentioned a Thing that got taken out on prospitianescapee yesterday, I was talking about the meningioma I had removed a few years back. The pineal Thing is still in my head.
2) The pineal Thing is going to stay in my head. (I don't know how to feel about that yet!)
The appointment I had in Cleveland on Tuesday was me getting a second opinion about whether they wanted to try and get at the pineal Thing or not. The answer was "no" - it's too small and almost certainly just a cyst. The chiari/cerebellar ectopia thing was of even less concern to her, because the overreach is so tiny, and anyway the only treatment for it is removing part of your skull. Too drastic!
(I'd already seen a local neurosurgeon, who said the same thing, but I didn't trust it coming from him - he hadn't read my chart or looked at my records and seemed in general pretty out-of-it. My mom was with me in his office, and at one point I think he even forgot which of us was the patient. Cleveland Clinic's where I got the meningioma removed, so I went back there.)
What the Cleveland neuro advised is just yearly MRIs + battery of neuropsych tests to quantify my vision/hearing/motor issues. This doesn't solve the problem of me feeling cruddy all the time, but at least we have eliminated an explanation? Science. Next steps are hassling an endocrinologist and gynecologist about whether I have, like, endometriosis, or an earwig that crawled in my ear and made it all the way to my thyroid.
So, I do not actually need brain surgery again. Disappointingly? SHOULD I BE DISAPPOINTED OR NOT?????? I am disappointed that I do not need brain surgery, regardless of the rationality of this. I really wanted to cut the problem out and feel better again, that was pretty okay, that other time I did that! A validating experience.
