So we just got back from the Duke Raleigh ER. After sinking four hours doing blood work and CT scans all we know is everything looks normal. The CT scan shows a fluid “pocket” or buildup around where the surgery was done. We were informed the headache was probably due to the pressure buildup from the fluid. To give you an idea of how bad this headache is, they gave me 5 (not sure if the dose is mg or not) of Morphine. I only got 4 when I was in the hospital post-op and that worked fine. Well even this extra jolt of pain meds only dulled the headache and didn’t make it completely go away. It probably took me from a 6 to a 3 on the pain scale. Then within 2 hours I was back to the full on headache even worse than when I first arrived. I mean when it is at its worst I can look in the mirror and see my temples moving each time my head pounds. And when it stops pounding it was so bad that my temples and forehead are very sore and tender to the touch. And because I have all of this luck and happen to not tolerate percoset well and get violently ill when taking dilotid he pretty much told me there was nothing they could do. All of the medicines that do work for me they won’t let you take outside of the hospital.
I suppose it is positive to know that the fluid buildup is pretty common and there is nothing seriously wrong. Another positive is that he was able to talk to Dr. Zomorodi’s partner and he guaranteed me that Dr. Zomorodi would be up-to-date when he returned on Monday and would definitely want me to follow up next week and could probably get me in Monday. So the frustration now sets in. I have just taken my first dose of the new prescription of percoset which is double the amount that I was taking. This isn’t even putting a dent in the headache. So I can just imagine laying here trying to be as still as possible and not focus on the headache until Monday. Not cool, with my ADHD laying still for so long drives me crazy so it boils down to a choice between having a dull headache and focusing on laying still without getting too frustrated, or giving in and moving as much as I want but having an intolerable pounding headache.
Probably the most frustrating thing is just that I am just now learning what people mentioned about how there isn’t really any consistent after-care for this surgery. We were just commenting today that our parents were more informed about what they were getting into for having their knee replacement surgery than I was for having a “brain” surgery essentially. And it doesn’t exactly make you feel the best when you get setup in the ER and the nurse asks you if you have had any surgery and you explain the surgery you had and mention Chiari Malformation and get this blank stare with a “what is that? I have never heard of that before.” I suppose I should have expected this because I had certainly never heard of it until I was diagnosed but then you are kind of like why am I even here? How are you going to treat me if you don’t even understand what is wrong or what I had done?
And of course, Murphy’s law both my primary doctor and Dr. Zomorodi’s PA finally returned our calls about 10 minutes after we decided they weren’t calling back and headed out the door to the ER. So I’m not sure if I will be back on here until sometime next week depending on how bad the headache is. I have noticed that when it calms down even just sitting up for more than 5 minutes will make it come back in full force. Hopefully things will calm down soon.
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