26 y/o female; cranial nerve schwannoma

[alibauer]

Hi All,

Just tols I had a schwannoma on my cranial nerve on Monday after an MRI was read. CT follow up will be read on Friday morning. Not sure if it's an acoustic neuroma, and wondering if you guys could help me with that. It's located on the left side of my neck next to C4. Is this an AN? No idea.

I'm angry because I'm young and I don't want cancer and this could be malignant. I'm angry because my doctor said it was benign so matter of factly and I had to ask him if he was positive that it was before he admitted that he couldn't be sure unless we took it out. I'm angry because I want to be a mom and a grandmother before I die.

I am also ashamed because some of my fear and anger comes from vanity. I am young and very beautiful and I don't want any facial muscle weirdness to ruin my looks. I know that sounds horrible and conceited, but that's how I feel.

If I could cut this %$#&er out myself, I would.

[Kathleen_Mc]

It is completely normal to be angry at this point, at least your getting it out and these are valid concerns, a.n.'s are non-cancerous tumors traditionally and I think you need to determine exactly what it is you are dealing with first. I waas young and good looking when they found my a.n., it was very large and there was no question that I needed surgery right away, I wasn't told pre-op that my face would be "disfigured" and truefully that shouldn't matter.....what does it matter what you look like if you end up dead and brain tumors untreated will eventually kill you ( although they are non-cancerous they eventually put pressure on the brain stem where the "breathing centre" is and you just stop breathing).  Once you find out what it is your dealing with find out your treatment options, maybe the tumor is small enough for gamma kinfe or linac and these procedures may save your face. Kathleen

[alibauer]

Definitely true, Kathleen, thanks. Yeah, I still don't know what's wrong, but I know that it has to come out. I'm thinking it's cancer though, and not an AN. The reason is that a year ago I had a seizure, and an MRI to check for tumors. The MRI was negative, or so they said. If I grew a tumor in a year, it's got to be cancer. We'll see.

Anyhow, thanks for the comments. I hope your AN situation is resolved and that the treatment hasn't been disfiguring.

[russ]

Hi alibauer
  I read your initial post. The frustration is understandable, but why are you jumping to conclusions re: Cancer? Seems a growth at C-4 should be able to be biopsied. Have they mentioned anything about that?
  What are your symptoms? It could very well be benign. Anger will not make it either way. One must begin to trust somewhere and we pay physicians to treat us, so why not trust them IF they are well experienced? I trust the Dr IS well experienced??
  If not a highly reputable clinic and Dr, then maybe a second opinion would be good.
  Best wishes!
  Russ

[mom of AN pt.]

Hi, my daughter is only 16 she was diagnosed in March... and operated on in April for a large 4.5 cm AN.  Her face was only one of our concerns but it was a looming one...as it is for you.

So, I would like to just address your concerns about your face.  It's a natural fear, but keep in mind, in most cases the facial problems are only temporary.   
 
My daughter did have some facial paralysis after surgery (as predicted)... but it has resolved really well. She is only three months post op and she looks good.  Her smile is back, she can wink.  She wears contacts again. 

Please try to calm yourself a little, I know it's really hard.  Others.. young and old have been right where you are...and are OK now.

[alibauer]

Thanks, everyone. This is such a great discussion board!

Russ, the reason I think it's cancer is simple - 1 year ago I had an MRI because of a seizure. It was negative for tumors. Now I have a 4cm tumor that grew in a year. Growth like that is almost never benign, which is frightening. We'll see, but biopsy or not, the sucker is coming out.

To "mom", thanks as well. I realize the face stuff is supposed to be temporary, which is a relief. It's not a #1 concern, of course, but it's there. I initially went to the doctor for salivary gland symptoms that my doctor thought may have been a parotid gland tumor. The surgery I would have needed would have been much more disfiguring and potentially paralyzing as well.

Anyhow, please keep your fingers crossed that this isn't cancer. My gut is telling me it is. Malignant schwannomas are deadly, so I'm praying that I'm wrong.

[Jack Palmer]

Ali, How did things turn out? - Jack

[SKT]

I just read this post also.  Keen to learn  that all went well for Ali?