Newbie to Vestibular Schwannoma

[Muffin]

Hi! I was just diagnosed last Friday from and MRI.  For being a rare tumor, it sure seems like there are lots of people with it!  I have some questions and wonder if this is where to start or is there a better spot?

[CompassGeorge]

Muffin, You are right! Lots of people have had this so you are not alone. One thing that you will soon learn, if you haven't already, is that everyone's journey is different but there are some common symptoms and side effects that you will hear about. I think that this site is a good place to start. I have heard that there are also some good resources on Facebook but I haven't checked them out yet. There are many YouTube videos that document the a.n. experiences of others- I have found these helpful to me. George.

[Greece Lover]

I agree this is a good place.  I don't use Facebook either.  It's true that everyone's journey is different.  My only caution about using this site is that you don't over estimate anecdotal evidence.  Some people push certain treatment modalities.  I've found it to be very helpful, but ultimately the decision comes down to you, your family, and your doctor.  The most important thing is to find a doctor who has lots of experience treating AN.  Good luck!

[Muffin]

Thank you CG and GL.  Since reading so much about this tumor I have now named Rascallion, a rogue, and since questions are my thing, I am sure getting lots to ask the doctors. I am set up for two opinions. One and the U of M and one at Mayo. I do not see lots of feedback from those two places but the two docs I am seeing at Mayo were mentioned. People are talking about the House Ear Institute a lot. I read about them today. They sound like the place that started a lot of new procedures docs use from all over. In fact the U doc I saw employed it 20 years ago and a woman's hearing was saved.  I am not sure she was losing her hearing at first but she was very unbalanced. She still has her hearing, plays volleyball at 70, and no palsy.  Is the HEI the best place to go? Is there a ranking somewhere for this type of surgery, like where is your best place. I know there are good people all over the world, but know no two surgeons are alike. I do want a team, don't want any gamma or cyber. I wouldn't like to preserve what hearing is left. It seems that some lose it all. I sing and transcribe, so I really would like to keep it, if possible.  Mine is pea-sized and from the MRI, it appears to be in the canal.  Thoughts?

[ANSydney]

Welcome to the forum Muffin. As Greece Lover said, some people push certain treatment modalities. I find that most people are advocates for whatever method they've chosen be it open surgery, radio surgery or observation. Doctors will recommend, for your particular case, whatever treatment they do, be it translabyrinthine surgery for ENT, retrosigmoid for neurosurgeon, radio surgery, using whatever machine they've got, for radiosurgeons. With regards to observation, look at pubmed using "conservative vestibular schwannoma" to get that viewpoint covered.

Talk and read as much as possible, but ultimately it's your decision.

How long have you had symptoms, what are your symptoms and how large is your tumor?

You mentioned something interesting,  "For being a rare tumor, it sure seems like there are lots of people with it!" Would you believe:
* ~1 in 100 people with die with an acoustic neuroma, most not even realizing they have one [from autopsy studies]
* ~1 in 1000 people will be diagnosed with an acoustic neuroma in their lifetime
* 1 ~ 2 people in 100,000 are diagnosed each year

[Muffin]

ANSydney, iI did know it was one in 100,00O and that it is considered rare which is why it takes a while for people to get to the MRI. I had nasal therapy twice and it was three months before I got the MRI. I can see why people die with them and if they don't have insurance, they probably give up. My uncle had this in the 70's. From what I read, it seems that immediate family matters but not uncle/niece. His was golfball sized. His face was going dumb when he went in because his wife insisted.  He never made it. He survived the surgery but the autopsy said he died of brain edema.  He was only in his 40's.  The shock of this diagnosis didn't last long. I had suspected it for some time, but I do want to learn as much as I can without overload so I know what questions to ask doctors and make a good comparison.  That is why I wish I knew more about whether or not there is a super duper neuro man that loves operating on these and stands out a bit above the rest.  So much to read. Interested in lots. Will check on other headings.  Thanks!

[ANSydney]

That's 1 person diagnosed in 100,000 per year. 90%, based on autopsy studies, die with their tumor without knowing they have one, not due to lack of insurance.