i had Ck in early January of 2009. since that time, i have had the following:
1. lost the usable hearing in the AN ear. 80% word recognition before to 20% when tested in summer of last year - now to 0?
2. my face has numbness - 0 issued until late summer 2009. now it is approx 20 to 30% involved. and half of the tongue as well.
3. i now have headaches - 2 to 3 per week --- very tight muscles in the neck then the head hurts in just a little back from dead center and upwards.
4. balance - lightheadedness issues. yesterday, it was no problem, until about 1:30 when i entered a somewhat dark area in a building with dark floors and i wondered if i could even walk. in the month or so before Ck, i started to notice some balance issues but not too bad ---
all of the above issues were at a level before CK --- today they are greatly amplified. the issue appeared or got worse and has stayed pretty steady since onset .... after CK.
During the AN journey i have met some good medical people and some that i could care less for .... yesterday i met 2 that helps to make the days better .... these were:
1. The lady that checked me in at treatment center - St Anthony's hospital in Oklahoma City - she was funny and yet a true professional.
2. Dr Clinton Maybery --- the doctor from the cyberknife forum web site.
My Ck doctor does not follow up on patients, he sends us to see the neurologist. The neurologist's demean er / attitude / personality don't match well?
The ENT that had diagnosed me read statistics to me when i asked about my issues. i tried to see a local AN expert but he declined to see me as i had been treated by others.
so i wrote an email to Dr Medbery - i explained my sympthoms and my history. He answered very quickly and we set up an appointment for a consult. i gathered copies of my MRI's and we drove to see Dr Medbery. He spent at least 45 minutes examining, looking at MRI's , and talking. He talked and answered our questions. he showed the nerves in the MRi's ... he never tried to just say words and get us out the door. He talked about:
Headaches
He said that he can understand and explain medically all but the headaches. He says that a some have them, but he can not see why ... he looked on the MRI's for the liquids from the brain to have been stopped form flowing ... he advised to cut back on all of the Tylenol, etc as much as possible.
numbness
the trig..... nerve was damaged - this will remain as is? he said tha this is rare after CK -- why me???
hearing
miracles occur - but not often. it is gone.
lightheadedness - balance
He said that people see improvement for the first 2 years - so he said Thai ti have hope / good chance for improvement.
the tumor is showing signs of dieing!!!!!
so i got no magic potion to ake care of everything. ... just a lot of stuff explained to me. i will place these two peole in my box of good people that did a great service for me and made a good impact.
Phyl - he was wearing scrubs - so no pink paisley tie was to be found ...
