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OK … either it took 2 hours for my Percocet to kick in or the Homeopathic remedy that my wife and mother-in-law swear by works even better.  I apparently dozed off after taking 7 of these Homeopathic pills thinking that nothing would help my headache.  I woke up and got up and went to use the bathroom and when I returned and got back in bed I waited for the usual pounding to begin … nothing.  I can tell that it could come back at any moment if I overdo it so I am just happy and content to sit in the bed with the laptop as I have been doing each day feeling much much much better.  What a relief!

Arnica Phosphorus 30 c made by BOIRON for Dizziness with Headache … just do it!

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.

So today I am starting to freak out.  Starting a couple of days ago I began having crippling headaches.  My head would just pound like somebody was inside my forehead doing some construction.  Watching in the mirror I could see my temples throbbing in temp with my pulse. When I lay down and don’t move it generally feels better but my temples and forehead are sore from the headache and as soon as I sit up or stand up and move around my head starts pounding again.  Adrianne called the neurosurgeon on call last night to discuss what was going on and they mentioned the same thing that Dr. Zomorodi did when I was still in the hospital and had very bad headaches.  Best case scenario is I have Chemical Menengitis which is when the surgical fluid mixes with the spinal fluid during surgery.  This is supposedly easy to treat with steroids but they prefer not to unless it becomes unbearable because the steroids slow the healing process.  They also said they could do a CTScan to rule out internal bleeding which she didn’t think it is.  That is the part that is freaking me out a bit because I woke up this morning and looked at my pillow and there are several small blood spots (which has never happened before).  We are trying to go in to get checked out today because I also have nausea, claminess / sweating, and random muscle spasms.  Last night was a doozie of a muscle spasm … every single muscle in my body spasmed at once.  It probably would have been very amusing to watch as my arms and legs flailed in all different directions while my back arched and neck and head jerked backwards.  What a fun time!  So Adrianne called mainly because she was concerned because all of those symptoms can also be attributed to an allergic reaction to Oxycodone (the narcotic in Percocet). Sooooo … trying to take it easy for now until we can figure out exactly what is going on.