Is everyone ?

[clr]

Is everyone with an acoustic neuroma considered to have NF2?  I was looking at my daughter's cd last night and it said her diagnosis was nf2. Now, no one has come out and told us that, I just read it on her cd. The neurosurgeon said she may be nf2 since she was so young to have such a large AN but he never said she was/is.

Thanks,
Cindy

[cindyj]

Hi, Cindy!  No, everyone with an AN does not have NF2.  In fact, most ANer's do not have NF2.  I don't know a great deal about NF2, but we do have some forum members that do.  You might want to go into the NF2 section on the forum and ask around. 

Cindy (also)

[Jim Scott]

Cindy ~

I can state unequivocally that every AN patient is not considered to have NF2.     

Neurofibromatosis ('NF2') is relatively rare (approximately 1 in every 50,000 births) and considered to be a genetic disorder.  Because an NF2 diagnosis indicates an acoustic neuroma on both sides, which can lead to deafness, I would definitely ask your daughter's neurosurgeon about this diagnosis and if it is accurate, how he plans to go forward.  There are other symptoms of NF2 in young people i.e. cataracts at an early age, but I would not accept guesswork or supposition.  Consider having another MRI scan done, if necessary, to either substantiate or invalidate  that your daughter has NF2.  I hope the answer is a definite "no".

Jim     

[clr]

Thanks for getting back to me!

Jim,

Her neurosurgeon did say that she will always have to have MRI's done because it is possible that she could get one in her other ear and if she he did, she would have NF2. I took that to mean she wasn't NF2 until she gets another one in her other ear? Since it is genetic, do they do genetic testing to find out for sure without waiting for one to appear in her other ear? We don't go down there again until Febuary. I am having her PCP fax release papers tomorrow and they are going to take a look.

Her first MRI was done 12/1/08 here at a local hospital. I do not have copies of that one. Her next MRI was done at UPMC on 12/16/09. This is the one that says Diagnosis: Neurofibramotosis 2.  Can they diagnosis that from an MRI? I am trying to find ways out of this (NF2) in case you can't notice.

Thanks,
Cindy

[Debbi]

Cindy-

That's a scary diagnosis!  I would definitely ask the neurosurgeon for a referral to a doctor who specializes in diagnosis and treatment of NF2 - it seem very odd to me that the MRI report would diagnos NF2 without the presence of a second tumor.  If you Google Neurofirbromotosis Type 2, you will find quite a lot of information.  Just for example, here is a link to the Wikidpedia page on NF2 http://en.wikipedia.org/wiki/Neurofibromatosis_type_2

As the other Cindy suggested, you should visit the NF2 section of this forum - you can contact others who have NF2 to get some better information.

Also, I seem to remember from one of the sessions at the Symposium in Chicago this summer that there IS a test of some sort for the genetic disorder that causes NF2. 

I will keep you and your daughter in my thoughts and prayers.

Debbi

[Cheryl R]

To be NF2,she would have to have an AN on the other side,or another type of brain tumor like a menigioma,or an spinal tumor. Also there can be skin neuromas and the cataracts ina younger NF2.        Only 5% of ANs have NF2.       It is not always genetic.    I am fairly sure my NF2 is not.     There is now a genetic mutation which can also happen.                I am curious why they said your daughter was NF2.     I would be asking questions as it is important to know as the treatment for a person with NF2 is sometimes not like the usual as one must choose to possibly keep hearing and what the various size is.           Good luck with this!
                                                      Cheryl R

[Raven]

I agree with Cheryl R, you have to ANs on both sides. When I was first diagnosed I kept telling myself I'm not NF2, I just have bilateral ANs. Well, my Dr. promptly ordered an MRI of my spine and it showed 5 small tumors. Maybe an MRI of the spine may be in order. Good luck, keep us posted                 oh, and by the way - NO STEALERS

John

[clr]

Ok, I took another look at her cd's. On 12/16, the cd of her brain says, Diagnosis: NF2 pre-op. Clinical History: NF2

Then, on the report of the spine, 12/16 It says "Essentially unremarkable MRI of the cervical thoracic and Lumbar spine w/no stigmata of NF2. " It also says "Posterior fossa mass not adequately evaluated on this examination. Correlation w/dedicated imagining of the brain recommended."  What is that?

All of her other cd's say Diagnosis: Acoustic Neuroma

No one has told us she has NF2, just these darn cd's mention it!!

Oh, and I thought I was in the NF2 category?

Thanks again everyone!! Your responses are very much appreciated!

Cindy

[Debbi]

What a confusing report!  I think I would demand a meeting with the doctor/s and tell them you want to know exactly what you are dealing with. I am not sure what is meant by "dedicated imaging of the brain?"  I kind of thought an MRI accomplished that?  Wow - very confusing! 

As Cheryl pointed out (from experience) treatment for NF2 patients may be different than it is for us "run of the mill" AN patients.  It is definitely not something you want to play around with.  Hold her doctor's accountable for detailed explanation and diagnosis.

And, please keep us posted on what you learn.  I am sending prayers.

Debbi

[Nickittynic]

Hmm, I'm interested in why your daughter's doctor's report says that. I'm a year older than you rdaughter (23 at diagnosis, though) and had a tumor around the same size. When I asked about NF2 (thinking that maybe since I'm so young the tumor might not have grown in the right ear yet [for bilateral tumors]) my doc said no, because the tumor on the left was so big that if there was going to be one on the right as well (indicating a possibility of NF2), it would be there already.

[Jeff]

Hi,
I am no NF2 expert, but want to share this:

From: http://www.advocurenf2.org/01_understandingnf2.html
Best wishes,
Jeff

[Nickittynic]

Thanks Jeff - interesting read!
I'm interested in the part about NF1 as well since when hearing of my tumor my baby's pediatrician wanted to keep better track og my baby's birthmarks (so far 3 cafe au lait spots). You'd think as a nurse I'd understand this stuff better!

[clr]

UPDATE:  I finally heard back from her neurosurgeon's office yesterday. Betsy does not have NF2!

When I first called and she was looking at Betsy's cd's, she insisted nowhere did it say that. I insisted back that it did too! It was wierd, I felt like she was telling me I was making it up! Anyhow, when I talked to her yesterday, I told her the next time I get them out, I am taking a screen shot and emailing it to her.

Thanks everyone for all of your help!!

Cindy