Margaret, (and Linny)
Way to go on the eye blinking Marg. Yahoo!
During my first post op doctor visit (while still at Stanford) I showed the ENT folks that I could partially close my palsy eye as I was desperately hanging onto some optimism. They explained that this was just “palsy roll�… thus my optimism balloon deflated.
My eye issues continue (even got infected last week from being in the bubble – known as the “germ incubator’) and I went to the Casey Eye institute (not ENT)… and I finally saw THE OHSU ‘eye guy’ Dr. Ng … and he did NOT want to do the eye eight surgery on me as he feels that the 2 surgeries (one to put in and the other to take out later once palsy resolves … whenever that is) is too much after just having the craniotomy …but ordered for me an external weight. It has double sided tape and adheres to the outside of the eyelid. (Between the nasal strips at night to keep the palsy nostril open, the tape on the eye patch etc my face is an ewe gooey 3m gluey sticky mess). You might want to check this out. I will post on the forum my opinion of this device… once I have tried it out.
I am noting a big relationship in all the posted threads here between EXHAUSTION, STRESS AND SYMPTOMS WORSENING. (I cannot image carrying mail i.e. pressure on the spine and CSF and so much walking to be good for your recovery here - Linny). I am determined to manage the pain with regular Tylenol only as I think the meds were causing other havoc on my GI (well noted on this forum with others) and often hide the symptoms of OUR BODIES SAYING “SLOW DOWN, REST … HAVE A NAP!� I know when I was feeling better, on the pain meds, at the hospital – I did too much (and paid later with CSF leaks)
Last night was the first decent nights’ sleep I have had since surgery. First thing this morning, while I was still laying down, my palsy eye opened and closed properly (beyond the palsy roll closure) … however once up and at it -the function stopped. Obviously after rest – the nerves are connecting and functioning better… Before bed facial palsy (and slurred speech from mouth palsy), for me anyway, is worse and eye ever so irritated...
I think some people are just going back to their work and responsibilities (little kids at home etc) too rigorously after surgery … and using various meds to get through the day. These meds mask the very symptoms that we need to listen too.
MANY OF US HAD HOLES DRILLED IN OUR HEADS – THIS IS A BIG DEAL. REMEMBER It WAS NOT JUST EAR SURGERY – WE ARE TALKING “BRAIN SURGERY� WE HAD. REST REST REST
LINNY I THINK YOU ARE DOING WAY TOO MUCH, PHYSICALLY, can you see if you employer can change your position so that you are not SO physically active … I am a big proponent of physical fitness but not physical “exhaustion�.
Margaret wrote
"Today I could finally closed 'tight' enough to keep out the water. I know that my AN family will realize what a exciting 'big deal' it is to me (the people at work I told today said 'oh... that's nice' )"
This morning I told my neighbor (who is driving my kids to school for me as I am still a drunken sailor here- or is that pirate with a patch ARBY DAR!) that I had some eyelid function this morning and she said 'oh... that's nice' too.
OK AN forumers lets have 3 cheers for MARG and her renewed blinking abilities! (1) Hip Hip Hooray! (2) Hip Hip Hooray! (3) Hip Hip Hooray!
Linny I was told the 6 month thing too… but then told it will vary from patient to patient. (I too look snarled face but because I am wearing a dark eye patch it is less obvious- I just look like a 'drunken' pirate now) I was also told to "rest rest rest� (I think the relax word was in there too)
Cheers,
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