ADVICE PLEASE

[jazzfunkanne]

Hi a young friend of mine in the uk (who is 18) had a large AN removed, and has a smaller one on the other side, they told her she does not have nf2, does anyone know of anyone who has had a AN on both sides, and is their anyone her age out there, many thanks in adanvce

[Raven]

I know someone who has bilateral ANs........having ANs on both sides is the hallmark for having NF2. How did they determine she didn't have NF2. Maybe a MRI of the spine would be in order, most NF2 people develop tumors on the spine.


John

[Lizard]

Yea I'm suspicious of the NF2, especially due to her age.  I think if I remember correctly the only way to tell is with a DNA test?

[leapyrtwins]

Anne -

add me to the group that thinks your friend might be NF2.

From what I understand, there is a blood test she can have that will tell her if she is or not.

Jan

[nicolej]

Hiya. Anne told me to come onto this site. Im the girl who is 18 and had surgery to removed my AN . I have also got a smaller tumour on the left side. The doctors took blood tests. They told me that the tumours have not been passed on from my parents and I don't have the NF2 gene in my body. I also can't pass these tumours onto my children if i ever have any. The doctors don't understand how I managed to get these tumours especially at my age.

[lori67]

Hi Nicole!

Well, if the blood test says you don't have the gene, then I guess you don't have NF2.  That's good.  As for why you were "lucky" enough to get 2 AN's - who knows.  My doctor said that some people just seem to be predisposed to developing these unusual things, even though they don't have NF2. 

The good thing is, you shouldn't have to worry about developing tumors along your spine.  I know, that's probably a small comfort.  But at least you know about the other one and can keep a good watch on it to make sure it doesn't cause any problems.

My dad had 2 AN's also, but since he passed away without having been tested for NF2, we don't know if he had the gene or if he was just "lucky" like you. 

Good luck to you!
Lori

[sunfish]

Very glad you've joined the forum! Very sorry about the tumors!

I'm sure you've already figured out this is likely to be a lifelong issue for you, at a minimum you will probably need frequent monitoring.  I'm not a physician, but do work in healthcare.  The people I see who do the best in managing their medical problems are those who are very well informed about their conditions.  So my advice - read, read, read the available info on this website and elsewhere.

Also, in the brief time I've struggled with this diagnosis, I've had to come to grips with the impact it has/will have on my life, and the uncertainty that goes with that.  I think it's important to face the emotional/psychological issues that go with this condition too.

Hope you become an active member of our little group here - we are so blessed to have the ANA!

[Cheryl R]

Nicole,    Good you were able to come here.        You will have to keep close watch on the other tumor as if it does need treatment someday, will be like a NF2 even if you are not.       I do have this and have had tumors on both sides.    I am much older but do know thru here and our symposium conferences young people that have one sided ANs and also 3 NF2 young ones.     
Doing the best treatment to keep hearing on the other side can be more challenging.                     I have no family history also of NF2 and hope that my grown children will not have this also in the future.                  I wish you well and hope for no growth of your small tumor!                                 Cheryl R

[Lizard]

Its great to hear that you don't have NF2, but I'm sorry you have bilateral AN's, not a normal occurrence.  Welcome to the forum, you're in the best place you can be for support.
Hang in there,
Liz

[jerseygirl]

Hi Nicole,

The doctors are simply saying that they cannot prove by the means available to them that you have NF2. There is no genetic inheritance and the blood test is 60-80% accurate at best. NF2 cases do not necessarily have to be inherited because the rate of spontaneous mutations is 50%, that is, 50% of cases appear out of nowhere. Furthermore, the blood test is not sensitive enough in your case to pick up the mutations you do have. Either it can't or your mutations are very rare and they are not being tested for. Compounding the issue is the fact that NF2 has a very high rate of the mosaicism, i.e., mutations are in some cells but not others. NF2 mosaics have many, many symptoms of the disorder but their mutations cannot be found in the blood, presumably because they are not there.  Mutations always exist in the tumor regardless of whether or not they can be found simply because no tumor is normal and some genetic atypia has to be present for the tumor to grow.

In the US, you would be diagnosed with NF2 whether or not it can be currently proven because it is by definition "bilateral acoustic neurofibromatosis". Spine scan will be a very wise idea.

There is another NF2er from UK - Tony. I forgot his exact user id and we have not heard from him awhile. I miss his insight and sense of humor. Maybe you could send him PM.

          Eve

                      Eve

[Louise UK]

Hi all,

I dont normally read threads in the nf2 section, but thought I would have a look. After reading, I must say that I started panicking. I was 26 was I was diagnosed with a large AN and my surgeon mentioned nf2 at my initial consultation. After my surgery, he came to see me, to see how I was doing and im sure I was told that I didnt have nf2. However since reading thid thread, ive started to scour the internet about nf2 and it seems that there is no definitive test for nf2! So im panicking now that maybe I do have it, because I was young to have an AN. Can anyone offer some advice, as I was quite upset last night, thinking about this. Since being diagnosed there is just one thing after another, I feel like I cant cope anymore 

Nicole, lets hope you get some joy very soon about possibe nf2. You seem a strong person from reading your posts. Keep us updated with what's happening. x

[nicolej]

Thanks for everyones replies. Its really supportive. Its good that I don't have the NF2 gene, but somehow managed to get 2 tumours. I will always worry that the left side will grow but fingers crossed it won't as the doctors said both tumours came at the same time one grew and one didnt. I think I am the youngest person in the UK to have an Acoustic Neuroma. I found one person in Canada who is a year older than me. It would be good to find more people my age on here. I am just new to this website so not sure how to work it yet. Is there any way I can find people my age on here? x

[aliciafrye10]

Nicole - I was 12 when I was diagnosed with my AN..  this was over 10 years ago.  I just had the testing done to know whether I have NF2, and what I was told is that there is a 93% chance that if you have it, the techs running the test will see the mutation.  So there is about a 7% chance that you could still have it, it just isn't visible.  I hope this helps.

[Mark241]

ITS POSSIBLE THAT IT ISNT NF2, I HAD A 3.5CM TUMOR ON MY C2, C1 AND A RIGHT 3.4CM AN. ALSO THREE 2-3 MM LESIONS ON L2, L3. MY DNA CAME BACK NEGATIVE FOR NF2. EITHER WAY IM SORRY FOR YOUR FRIEND. GOOD NEWS IS IV BEEN ABLE TO STAY EMPLOYEED AND AND MY QUAILITY OF LIFE HASN'T REALLY CHANGED THAT MUCH. GOOD LUCK, GOD BLESS. 

[nftwoed]

Hello;

   It seems probably NF-2. Especially at that age. I have NF-2. The 2nd AN followed the first by 17 years, approximately. Spinal tumors occur in about half, as does neuropathy and post, subcapsular cataracts. A smaller number become symptomatic. Pheocryosomotoma ( adrenal gland tumor ) is somewhat common.

   Current blood testing is only about 60% accurate. There are many fale positives and false negatives.

   This will require yearly MRIs for the remainder of life as is a chromosomal disorder. The NF-2 gene on Chromosome 22 has either mutated, or been deleted. Mutation is more common, but your friend sounds like a Wishart variety ( more severe ). That large tumor took some years to grow.

   If there is good hearing remaining in the ear with small tumor, there is some chance it may in part be saved with early intervention.