2nd MRI w/Contrast done

[ajgordish]

Hello,

I posted previously that I had an MRI w/o contrast and the results stated "probable vestibular schwanoma"  I was given a disc after yesterday's MRI and came home and looked at the same area in question and sure enough there is a bright spot on the right side where the vestibular nerve would be.  It's small, maybe like 4 mm.  If this is in a fact an acoustic neuroma is has been a nasty little booger.  I know not everyone will experience vertigo and dizziness with an AN, but it has been a 10 month night mare for me.  I hope I can get some answers soon and figure out what to do to get back to some sort of a normal life.
 

[elizabethpoff]

I know exactly howyyoufeel.... Mine is even ssmaller and has been giving me vertigo... Nausea.... And all sorts of troubl.... Im wwaiting  for  next mri in August..... But can't imagin  wwatching and waiting for years.... Keep me posted

[michellef08]

Hello,
Being diagnosed is very scary, but we have all been there and gotten through! The best advice I can give is to do as much research, and get opinions from as many experienced AN teams as you can handle until you find a solution that feels right for you. As your tumor is small, you will most likely be a candidate for all 3 options (surgery (all 3 types), radiation, or watch and wait). Meeting with experienced neurosurgeons will help you decide what treatment is best for your individual tumor based on the size, shape, location, symptoms, risk factors, lifestyle etc.
Good luck! We are all here if you have specific questions along your journey!

[ajgordish]

Well, I have had some unsettling news.  The doctor called back and yes there is a small tumor on the vestibular nerve and ANOTHER one on the trigeminal nerve.  The doctor asked me if I was aware of something called neurofibromatosis.  Ironically, 15 years ago we adopted a little girl who had NF1.  She has undergone a lot of problems with NF.  She has an optic glioma that was treated with chemotherapy when she was 8.  It has not grown in all these years which we are grateful for.  She is 20 now.  I have been to more doctor appointments with my daughter than I have for myself and my other children combined.  I have studied and read more on NF than I have on pretty much anything else.  So when he told me this I almost laughed.  Have I heard of Neurofibromatosis?  I know it like the back of my hand.  But I was not expecting him to tell me he suspected I had NF2.  I do not have bilateral AN's at this point.  I don't know the size, he just said that both tumors are small.  He is a doctor/surgeon who has removed many AN's here in CT, but still he has referred me to a neurosurgeon.  I was too in shock at my appointment to ask why.  My husband usually comes with me, but this time I had to go by myself.

I have to admit that I know more about NF1 than I do NF2, but now I have to figure out how ANs are dealt with for people with NF2.  I hope they still will consider removing them because I am still so dizzy and just had another really bad vertigo attack.  I hope they will take that into consideration.  My quality of life right now is not so great. 

[researcher]

If you have bilateral ANs you should consider radiation over surgery. This is my opinion and I am not a doctor. But it seems like radiation preserves the hearing. There are folks on this site with NF2 and can provide more information. Good luck to you.