Today is my 2 Year Anniversaryfor my Middle Fossa surgery.
I HAD to come to this site and say how THANKFUL I am for this forum and the Acoustic Neuroma Association!! The little pamphlets that many of you recommended for me to get from the ANA were so helpful before AND after my surgery. There are so many people on there that were and are always there to help answer questions and just there for support if myself (or anyone) needs to vent. We ANers are so lucky to have a forum like this!! I have made friends on here and chatted on the phone and do emails with many. I am friends with many on Facebook too!! I will be honest and say that after about a year I am not on this forum daily, but do come back often and try to help & support others. Many of the people I have become closest to I am still very close to on Facebook.
As for me, I had the Middle Fossa surgery in hopes of preserving my hearing. Supposedly some of my hearing was still there according to the testing they do when closing me up. But that night I got some MAJOR swelling and a bit of trouble getting it controlled. My doctors think it took a toll on my already weak hearing nerve. The doctors thought I had a bit of a chance for it to come back once the swelling was under control. But, a week later I ended up with delayed facial paralysis. Not sure if that added to the stress of the hearing nerve or what, but it never came back. I was lucky enough that the paralysis was basically better after about a month. I still don't have tears on my left side, but at least my eye will now close and I can get by with some drops on most days.
My tumor was not big enough to totally disrupt my balance prior to surgery. So after surgery I had to really focus on the balancing and therapy. As of today, I would say I am pretty normal except when I am really tired.
I AM one that the weather can effect me. I get headaches so easy. Living in Michigan don't help since we have a change in weather a LOT. HAHAHA
Many here know that I did have a lot of problems since my surgery, even to this day with pain. I am not like many with pain in my surgery area, but I do have lots of neck & base of skull pain on my opposite side. I DID have previous neck issues before going into surgery do to being in an auto accident years ago. My surgeons DO believe that the positioning of my neck and length of the surgery played a huge impact on my current pain. ALSO, being SSD in the beginning I didn't turn my body well to listen to people/sounds. I just craned my neck a lot. That too has not helped with my head & neck pain. Now I am much better at turning my whole body when able in order to hear things. (I fought with insurance for a year, but still denied a baha device....I REALLY want an Oticon Ponto unit.
As for the surgery & that area, it feels normal and actually did within months after the surgery. Just a bummer we didn't plan better for my neck issues or something.
Due to the chronic neck pains (along with other issues I've had) I was awarded a temporary disability (will be reviewed in 1 year). Because of this I will also have a chance to get Medicare about 2 months before my 1 year review. I for sure will be checking into a baha device. I know that will help in a great way!
Thank you for reading/'listening' to my bit of a story. And for those that were with me since day 1....
Denise (MI)
