Hello friends,
I have not been on this cite for a long time because I have been doing well. So I guess I am the opposite of a fair-weather friend! It has been four years since my surgery; there was a small piece of the tumor left behind which has been stable. All has been peachy. But after a flight recently I noticed hearing loss in my "good" ear and luckily had my annual check up with my neurologist soon after. He was concerned about the hearing loss and ordered a CT scan, thinking that it was fluid in the ear. As it turned out, the change in hearing on the right side was due to an encephalocele, which is an out pouching of CSF and brain matter from the middle ear(I think) towards the middle fossa. This finding led to another MRI which found "possible growth" of the AN in addition to confirming the encephalocele. I have never been given such vague info about the AN, but more disturbing is the encephalocele which seems to be a very rare finding.
I received really unclear info from the doctor. He suggested doing nothing; consider options for the AN; smugly said I was "complicated" due to the hearing loss on the left (I wear a hearing aid) making it hard to decide what to do about the right side. Being "complicated" is really why I needed his advice, and I do not feel that I got it. But that is another issue! Also not feeling confident about his expertise in this rare finding that seems more neurology not ENT.
So I am just putting this out there to the community - any else have this diagnosis and what did you do about it?
I am just so frustrated and scared. Who on earth will have expertise in these two rare diagnosis occurring in one patient?
Any suggestions are welcome!
Thanks.
Suz
