a LOT of info, I couldn’t keep up so Jeff took notes & doc wrote some down. I’ve been weaned off several of the meds since last appointment http://blog.scottsontherocks.com/blog/2017/03/08/neuro-030817/
Today, we talked about any benefits/changes/problems, etc since those changes. Still have head pain, especially waking me up at night but I had that while TAKING the meds so that is not a new thing. HOWEVER, while we were talking, I guess he heard me describing what happens when I lean down/lie down and he wheeled over and checked my eyes/pressure in my head. Being OFF all these meds also means that this is the first time that he (any neuro) has seen me without the benefit of any meds regulating the pressures in my prain/head. Well…. datapoint, apparently I have increased pressure.
This is where they lost me. I got the joking… not joking… part where Jeff said the doc should drill another hole in my head and THAT could be a solution (stunt/shunt/stint… whatever it’s called).
BUT FIRST… he rattled of so much…
- get another MRV (ASAP) to see if that will show this pressure change that he sees
- vision pressure test
- do a lumbar punture (remove spinal fluid) (also ASAP) to see if that helps w/ pressure changes and I *THINK* he said he could test the pressures? but don’t quote ME on that, talk to Jeff
- in order to do this, i’d need to go off xarelto and take shots in stomach
- go back on the Diamox (acetazolamide) to regulate the pressure so it’s not causing longterm damaage.
Of course, he said he wants all this done “yesterday” and the nurse was like … yah right… I’m with her, I’m thinking Ive never had an MRI/MRV schedule that was less than 10-12 days (unless it was urgent). SOOO… will keep ya posted on all this as it unfolds. last MRI/MRV http://blog.scottsontherocks.com/blog/2016/12/31/mrimrv-123116/
AND NO… Kevin, we didn’t ask because all THIS was WAY too much to keep up with. I’ll have more appointments quickly again, I’m sure.
ALSO, we did ask about FLYING… and he’s all for it, so…. stay tuned for that too.
[NOTE UPDATE: apparently, it is urgent that I have all this done ASAP. MRV scheduled 07/06/17 3:30pm, vision 07/07/17 9:30am and lumbar 8am 07/10/17. They’ve decided i do NOT have to do shotes in stomach, just go off xarelto 24+hrs before lumbar]
[MRI UPDATE: well they did manage to stick my for the IV this time. struck oil & made a huge mess but at least it didn’t take 90+min. head really hurts now from MRI noise. will post results when I get]
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