Bilateral tumors, but I don't have NF2

[mmjgg123]

I know this is uncommon.  Has anyone else experienced this or know someone who did?  I had the bigger (2.5cm) tumor removed on July 1st, 2015.  I still can't move that side of my face, and I'm completely deaf in that ear with a loud tinnitus.  The surgeon said he kept both the hearing and facial nerves intact, and promised me they would both come back.  I understand i need to be patient, but it makes me very worried since I'll need to have the other tumor removed within a year.  My biggest fears is that I will be deaf in both ears and not ever be able to smile again.  Any experiences or advice would be greatly appreciated.

Thanks,
Mary

[Raven]

Can't comment on your hearing or facial problems getting better as I had already lost all my hearing on the left side and didn't have any facial issues post surgery. But I'm curious as to why you think you are not NF2, bilateral ANs are usually the NF2 indicator. I was in denail about being NF2 until the MRI of my spine showed 5 small tumors. Have you had a MRI of your spine?

John

[mmjgg123]

Yes, I had an MRI of my complete spine and I didn't have any tumors.  I also had an NF2 blood test, and it came back negative.  I'm hearing more and more that those blood tests are only around 60% accurate.  I'm in the process of getting my records and imaging to send to the Mayo Clinic.  I've had a second opinion and nephrectomy done there 6 years ago, so I'm interested in what they will tell me.

[Susan A]

Mary,
if you have bilateral acoustic neuromas, by definition you DO have NF2! Many people have NF2 without spinal tumors. As you know, the blood tests are not always accurate because it is possible to have a 'mosaic' form of NF2 - i.e. it's not in every cell in your body. You need to see an NF2 expert. Doctors who have experience with acoustic neuromas are not necessarily NF2 experts - and NF2 tumors behave differently to regular ANs.

Check out The Children's Tumor Foundation http://ctf.org for info about where to start looking for a good NF2 doctor, or try the NF2 Crew on Facebook. 

Susan