itching in ear and hives; genetic testing

[cedmonds]

I'm in the watch and wait group. Just curious if anyone has experienced itching deep in the ear with the AN and if so, what this might mean? Also would like to know if anyone with an AN experienced hives or rash on neck and base of skull.

I'd also like to find out how one is diagnosed with NF1 vs. NF2. Is NF2 always bilateral and does this AN always start when someone is younger? Should genetic testing be done for any time of AN to determine if it is NF1 vs. NF2. My doctor has not specified which I have but mine is only on the left side and is 3.6 mm and I am 49 years old. I'd like to get a second and third opinion to better understand what is going on and if I should definitely be in watch and wait. Thanks for any info!

Cheryl

[Cheryl R]

I can't say about the itching. Probably not related.          There is the possibility of you having NF2 with the addition of a meningioma along with a AN.     Frequently some would not even test and just say you do and keep closer watch with more frequent MRIs.      NF1 patients do not have acoustic neuromas (possibly rarely may) but their nerves are involved in a different way and do think it starts when young.     You do not have NF1.      NF2 can be hereditary and starts young when you have others in the family who have it.        One can also have an AN when young and need to be kept watch if in time do find to have other ANs or certain variety of brain tumors.          But one can be "old" when develop NF2.    This is rare but happens as did to me.   I had my first AN surgery when I was 49.  It was over 2 yrs later when the one on the other side appeared.   Then a facial neuroma developed on the same side as my first AN.      So I have had surgery for 3 tumors.  I am deaf on the side of the 2.    I was near all deaf when had the last surgery in 2008 and would be getting a cochlear implant soon after.      The miracle of rarer than rare occurred and my neurotologist  brought back my hearing.    So no CI.        I have had no more tumors and some issues in crowds or low voiced people with hearing but I am grateful every day for the return of the hearing.             You need to have a very experienced dr who knows NF2 also.       You may never have to have treatment or may of both depending on how they progress.   They will have to keep closer watch if another AN on the other side develops as so as to try to keep some hearing preserved.        I know sounds scary but time will tell how it does and try to not over worry till one does know more.   I know easier said than done.        I was back to work as a hospital RN after the first 2 tumors and retired with the 3rd.    I am not the typical case to have had hearing returned but close watch is more needed for you now.     Also some believe in radiation for an NF2 pt and others don't.                The rash too could be from another reason and even wonder if stress possibly could be the cause.                  Keep on with us and we will all hope for the best with you.                 Cheryl R

[Willbur]

I'm in the watch and wait group. Just curious if anyone has experienced itching deep in the ear with the AN and if so, what this might mean? Also would like to know if anyone with an AN experienced hives or rash on neck and base of skull.

I'd also like to find out how one is diagnosed with NF1 vs. NF2. Is NF2 always bilateral and does this AN always start when someone is younger? Should genetic testing be done for any time of AN to determine if it is NF1 vs. NF2. My doctor has not specified which I have but mine is only on the left side and is 3.6 mm and I am 49 years old. I'd like to get a second and third opinion to better understand what is going on and if I should definitely be in watch and wait. Thanks for any info!

Cheryl

At your age I wouldn't be concerned. NF2 generally anyone who is <30 with a unilateral acoustic Neuroma or anyone with bilateral acoustic Neuroma at any age. Or if you have one An and other tumors on the spine. I had genetics testing and it's like 60-80% accurate. There is always a chance for mosaic forms too but that's even more rare such as the case with Cheryl.

Trust me I'm only 30 and was diagnosed at 29. I'm on high alert still, but all the docs said there 100% certain I don't have it. My only argument was that before I was diagnosed with AN they pegged me at 90% virus and 10% tumor. That's my reasoning for such a high distrust. It never hurts to get educated or tested, but if you're concerned make sure to seek some opinions.

[cedmonds]

Thanks for your input on this. If I get a genetic test, will it only tell me if it is NF2? I wonder why docs don't offer to do genetic testing if there is a small chance like Cheryl's being an NF2? It sounds like I definitely need to see a couple other doctors to find out exactly what is going on. I've been blowing it off a bit because I want to think positively that it will not grow and not get too obsessed with the negative internet search which can become obsessive. I am an acupuncturist and have been doing chinese herbs, acupuncture and other natural things in hopes that perhaps it won't grow. But I' m scared too and want to make good decisions as I have two young children. Thanks again.

[Willbur]

Thanks for your input on this. If I get a genetic test, will it only tell me if it is NF2? I wonder why docs don't offer to do genetic testing if there is a small chance like Cheryl's being an NF2? It sounds like I definitely need to see a couple other doctors to find out exactly what is going on. I've been blowing it off a bit because I want to think positively that it will not grow and not get too obsessed with the negative internet search which can become obsessive. I am an acupuncturist and have been doing chinese herbs, acupuncture and other natural things in hopes that perhaps it won't grow. But I' m scared too and want to make good decisions as I have two young children. Thanks again.

They don't test for NF2 unless they suspect it. The radiologist sent me to the genetics counselor because I am unilateral AN and was diagnosed before 30. In Cheryl's case she's mosaic so you can't test for that. It's even more rare than standard NF2. If you do have it there's a 50% chance of passing it onto one of your children. I've spent lots of time discussing with docs and they said they're almost 100% sure I neither have NF2 or the mosaic form of it. Also the blood test is less accurate than my last estimate it's more like 30%. They said it's better to have tumor tested instead.

[Cheryl R]

I last had read that only 5% of ANs are NF2.    Plus when you figure in the a good percentage are the hereditary type than that figure goes down.         Plus testing for NF2 can show a false positive.        I think only a few places in the US even do the testing.   At one time it was only a place in Alabama and is  expensive.    Since then I have heard of some others.    I do not research any more since it has been soon to be 9 yrs since my last surgery.      My life has went on.        Also I feel one can research all you want but what your own individual case may or may not fit in the research.    I am sure not the typical ANer or one with NF2.          That is what is so hard about ANs that there is so much "gray" area of results and how one may do.     I don't regret having had surgery.   It wasn't a real fun time but am lucky in how in time I have done.         Reading this forum can make one think that everyone can end up with horrible long term issues.        That is not the case as so many many do well and back to their life.    Yes one can have the SSD or in occ cases the permanent facial issue but there is some help in fixing some of these problems to some extent.   What you occupation is and even how your personality handles changes play a part.          My journey started in 2001 so have come across many ANers thru internet and in person.       It is horribly scary when one finds about having an AN.    There was not the internet or as much info available so didn't know much pre op.   I am glad in time that more is out for us.                       Cheryl R

[Sheba]

cdedmonds - hopefully you've read that most ANs are "sporadic" - i.e. not NF1, not NF2 - it is a non-inherited mutation that happens during the patient's life, which allows the tumor to start growing.  95% of ANs are considered as sporadic.   

there is not much known yet about what causes the sporadic mutations but they think maybe radiation from dental xrays is one possibility.  especially for middle age people - the xrays at dentist were much stronger a few decades ago than they are now.

[Willbur]

cdedmonds - hopefully you've read that most ANs are "sporadic" - i.e. not NF1, not NF2 - it is a non-inherited mutation that happens during the patient's life, which allows the tumor to start growing.  95% of ANs are considered as sporadic.   

there is not much known yet about what causes the sporadic mutations but they think maybe radiation from dental xrays is one possibility.  especially for middle age people - the xrays at dentist were much stronger a few decades ago than they are now.

Interesting theory on dental xrays. I had so many of them when I was a kid, but stop going to the Dentist in my 20's and was diagnosed at 29. I wouldn't doubt if that had anything to do with it.