Hi,
My name is Nank. I am in NJ.
I was just diagnosed with AN on 6/12/13. It is 1.3 x 0.7 cm in dimension.
This started in the fall when the tinnitus started. I had on and off ear pain for about 4 years. Kept going to ear doctor and he could see nothing. Finally when the tinnitus started I said "can't you look in there?" So we did partial CT scan and carotid test, which showed nothing. He then said I had TMJ. I went to dentist in March and he said no way. I mentioned that I had a neurologist and he said go back to him. So I went to neuro in April and he ordered MRA and MRI, but I was waiting to have other surgery so had to put those tests off. Anyway, MRI on 6/6 showed AN as stated above. To me I don't have much hearing loss but the ear pain, tinnitus and weird headaches made me KNOW that something was wrong and different. I hate that I actually thought I was crazy when I am telling people my symptoms and they sort of don't really take you seriously!
I have already been to neurosurgeon who said Gamma Knife. I am scheduled for hearing test on 6/24 and have appt. with radiology oncologist on 6/25.
I have had a schwannoma in my thoracic region that I have been watching on for about 7 years. Neuro things I could have neurofibramatosis Type II. I stated this to neurosurgeon but he says no because you need to have two ANs to have that disease. So my other shcwannoma doesn't count? Now I am scared I have more of them in my body. I have a pain in my right hip area that no one can explain and it has been there for years.
Here are some of my questions?
Is there a such thing as a full body MRI? Or do you have to do MRIs of each part of your body separately?
I have had these neurologist and neurosurgeon for years watching my first schwannoma and know them like them, but should I be getting second opinions on this stuff? Should I be meeting with other doctors in the area, seeing their people, taking up time and getting the same opinion? Should I be researching the exact type of Gamma Knife machine? Is that necessary? I have such bad headaches already, can't imagine doing this research?
Also, I am AFRAID of MRI and did sit up MRI for my recent ones which was AWESOME. Actually sitting up and watching TV During test. I don't know HOW I am going to go into that Gamma Knife thing with that thing on my head, then in MRI, then whatever comes after that. What kind of drugs do they give you? I may need valium for a week ahead of time just to get me there.
I really can't believe this is happening! I'm still in shock I think about having a "brain tumor". Is that a wrong statement? It is not really on my brain?
Here's my other ridiculous worry. I don't want to tell people. I don't want them to feel sorry for me or have pity on me. is that strange? People do look at you differently right?
Well, that's my story so far. I have been reading alot here the past few days and of course am overwhelmed. Thanks for any advice you can give!
Nank
