Newly diagnosed AN with 2 meningiomas

[Nannybee]

Hello all, I'm here looking for information and support with my recent diagnosis of a right AN along with 2 left sided meningiomas. The symptoms that brought me to the ear specialist were high pitched tinnitus in the right ear (interfering with sleep) and progressive hearing loss. MRI revealed not only the AN, but also found what appear to be 2 meningiomas.
I have had one neurosurgeon consultation last week with the wonderful surgeon who did my lumbar spinal fusion 2 years ago. He does not recommend surgery for the AN, rather Gamma Knife. For the meningiomas, we can take a wait and see approach with the next MRI in 3 months or go after the parietal one now. He feels that one should be removed because it is causing some swelling I'd the brain.
I have an appointment with a second neurosurgeon next Friday and a neurotologist in mid February.
I am an emotional mess over this situation. The first neurosurgeon said with a unilateral AN, the likelihood of NF2 is rare.
The timing of this probably couldn't be worse. I will be returning to work after a 12 week medical leave for a badly fractured ankle (incurred when I had a vertigo spell walking down steps. I am afraid to say anything to my boss because it looks like I will be needing more time off for recovery from the craniotomy to remove the meningiomas, and I'm not sure about recovery after Gamma Knife.

[Tumbleweed]

Hi, Nannybee:

Sorry to hear this bad news for you. I know the feeling: I was diagnosed with two brain tumors. Seems like people like us get all the extras. 

Your doctor is, of course, correct that the likelihood of NF2 is nil with only one AN presenting.

You're at the worst part of this now. The good news is that means things will get better. Once you get treated, you'll begin your recovery and be on your way to better times. Hang in there. The darkest hour is just before dawn.

Best wishes,
TW

[Susan A]

I don't mean to frighten you Nannybee, but I have a diagnosis of NF2 with only 1 AN and 2 meningiomas, all on the left. (When I was first diagnosed, I only had one meningioma!) Although the chances of NF are really small, mosaic NF2 IS possible with only 1 AN. If I were you, I'd want to see a doctor who knows about NF2 to rule it out. NF2 tumors can behave differently to regular ANs when radiated. (http://nf2is.org/radiosurgery.php)
I saw three different doctors (2 neurotologists and a neurosurgeon) before getting to see the NF2 specialist who confirmed my diagnosis. I'm still on watch-and-wait - and hoping to remain there for years! I went through months of waking every day thinking about the fact that I had brain tumors, and now I rarely think about it!

There are NF2 specialists in eastern PA: http://www.nfmidatlantic.org/index.cfm?page=local-medical-resources&categoryId=6 Here's hoping the specialists you've already got lined up give you some reassurance!

[Tumbleweed]

Hi, Susan:

Just curious: Do you know how your doctor determined you have NF2, seeing as you only have one AN currently presenting? Was there some sort of genetic test performed? I've never before heard of an NF2 diagnosis with only one AN evident, and I'd like to learn more.

Thanks,
TW

[Susan A]

Tumbleweed,
yes, it is VERY unusual to be diagnosed with NF2 with only 1 AN and I certainly wouldn't want anyone with just 1 AN to think that NF2 is likely! I have a genetic condition called mosaic ring chromosome 22, which has not affected me in the least. Damage to chromosome 22 is linked to NF2. Knowing that I had 1 AN, 1 meningioma and ring22, Dr Plotkin at Mass General told me he had no doubt that I had NF2, even tho I had fewer tumors than the diagnostic criteria called for and they were both on the same side. Without the extra info that I have mosaic ring 22 I doubt he would have considered the NF2 diagnosis - and would probably have said the meningioma was an unfortunate coincidence.

Dr Asthagiri at NIH was more cautious and did not officially enroll me in the NF2 natural history study that I'd volunteered for - until he found a second meningioma last August, at which point he said the diagnosis was confirmed. I have had no genetic testing done - I was told that it was not reliable enough to be worth doing in my case because we already know my NF2 is mosaic.

Susan

[Tumbleweed]

Susan, thanks so much for sharing this info.

Having a second brain tumor myself, it makes me wonder if I might also be NF2, although Dr. Chang thought it was highly unlikely. I think it's likely that chromosomal damage is the cause of my two tumors, as a hypoglossal tumor only affects one out of every 10 million people. (Add that to my AN, and the odds against having both are astronomical.)

How did your doctor determine you have mosaic ring 22? Seeing as it "has not affected (you) in the least," and you have had no genetic testing, I'm curious how the diagnosis was made.

Thanks,
TW

[Susan A]

TW - I had amnio done when I was pregnant. The test was compromised and they got an odd result so they asked me to do the amnio again as well as having blood drawn for a genetic test. (They took blood from my husband too.) The blood test was what showed mosaic ring 22. At the time, all the info I could find online about ring 22 said I should have been severely disabled. Since then, so many more people have been discovered with mosaic genetic damage that they realize the degree to which you're affected can vary enormously - in the past the people diagnosed with ring 22 were always the ones who were most severely affected by it.
So I won the lottery in having ring 22, in not being affected by it, and having NF2 as a result of the chromosome 22 damage and again not really being affected by it very much (so far.) Oh, and we're pretty sure that my kids don't have NF2 because we know from my amnios that they didn't inherit my ring chromosome! With the luck you and I have, we should buy lottery tickets ;-)

[Tumbleweed]

Thanks for explaining that, Susan.

Best wishes,
TW