young girl with nf2

[Amber]

I found out I had NF when I was 16. I had numbness with a dull pain In my arm whenever Id wear my back pack to school. I had a large bump on my arm with hair growing out of it. So I had it removed and the doctors did a biopsy on it and determined that I had neurofibromatosis. I didnt know much about it and I didnt really worry too much. Untill about 10  months ago I went to my family doctor about some hearing problems Ive been having only in my left ear. He thought it could be an infection so he gave me antibiotics which didnt do anything. So I was sent to a TNE guy..where I found out I have 30% hearing loss in my left ear and he didnt know what was causing it. Ive been having a hard time dealing with just that fact....21 and going def. Then I went for my mri. It turns out I have neuromas in both ears and a meningioma. The neurosurgeon thinks theyre more developing. Ive been starting to get these headachs that are really hard to bear. My boyfriend says "everyone gets headaches" he thinks that Im jumping to conclusions when I tell him I think its from the NF. What really scares me about this is that Im not going to live a long healty life and im going to go through all this pain that everyone is talking about and maybe even die of a stroke. Its super scary...and up to today when i Found this forum Ive been feeling so alone and I feel like no one is taking this as serious as I am. My children have a 50% chance of getting this!!

[Dealy]

Amber> I am a fellow NF2 person but mine was late onset. If you go too the NF2 thread on this forum you will find names of people that are also NF2. I am so sorry that you are facing this at such a young age. My first tumor hit at 38 years of age and the 2nd one I found out when I was 57 years old. There are several forms of NF2. Yours sound like the agressive kind-sorry too say. I had FSR radiation last summer on miy tumor too try too save hearing. I would suggest that you contact Jeff on this forum who has the agressive form also. He is older but the whole family has it-and yes it can pass on too children-50% chance. Please watch this forum and keep in touch with all of us-it may help you cope-and yes these do cause headaches and alot more. Mine shoved my facial nerve so much on the right that my whole side of face is numb including the inside. Also affects my swallowing. Go too the NF2 thread on this forum for more info on NF2. Thanks Ron.

[FlyersFan68]

Hi Amber,  Being part of great forums like this is a good place to start. You will find many answers and opinions regarding numerous topics including headaches. There is a section right hear regarding headaches. There is another section designated for NF2 patients. NF2 has it's own site and there is yet another called-patient network. You will find young adults there facing NF2 as well.  http://www.patient-network.com/   

[tony]

I agree with you that NF2 can be a very scary place,
I am NF2 - it sure scares me..
I agree also that many perish quite young from the condition
Equally, I know of quite few NF2s now in their 60s or 70s
and I know of a qualifed teacher (stateside) who is completely
deaf - and still working
I think what I am saying is : you never really know
In addittion to the support here I have a contact at the NF2 crew
which is stateside and completely NF2
- if you want I can put you in touch
Finally you need to plan your care - ie which doc/team
will watch over you over the next few years
It would help to select those who have experiance
with the condition - it is rare so the experiance
is rare also
Hope this helps
Best regards
Tony

[Jeff]

Hi Amber,

I terribly sorry that you have to deal with this. You have received some great advice. I am 41, and will soon have surgery. To remove my second AN. This will leave me deaf. So, I can certainly relate to your fears. I share them with you. I think that it is very clear that NF2 will have an affect on your life. However, I like the saying that I heard in the NF2 Crew group "I have NF2 but it doesn't have me." There are many there who have purposed to live life to the fullest, despite the problems that NF2 may throw at them. I would like to share that my father has NF2, is 66 years old and has led a great life. So, don't assume that you are doomed to misery. Hey Ron, I never thought of myself as having the aggressive form of NF2. I have had 2 acoustic tumors and have many, many spinal tumors. But, the spinal tumors have never caused me problems and may never be a problem.

It is easy to view headaches as NF2 related and I have struggled at times worrying about every little ache and pain. Most of the time they haven't been related to NF2. HOWEVER, Tony makes an important point when he suggests that you organize your management of NF2. When I have a concern, I consult my doctors immediately.

Lastly, as a person who inherited NF2 and a parent of one who may have inherited it, I can tell you that I am thankful for my life. I am far more than this condition! I try to live life as fully as I can today. I know this is tough and scary. I am sorry for that. Hang in there I know a young woman in Malaysia who has NF2. Perhaps you might want to check out her blog at http://yvonnefoong.com/ Let me know if I can help.

Best wishes,

Jeff

[Dealy]

Dear Jeff: Sorry if my interpetation offended you. Sticks foot in mouth. Too me at least the aggressive form-not being an expert of course is the type where the whole family has this plus you get repeated growths and surgeries. You see I have no one in my family but me that has this-my last surgery was 18 years ago-and too my knowledge my last MRI which was this Monday the 19th shows no evidence of re-growth on the first AN. The new one is showing evidence of edema. So that was my interpretation not official. I think Amber needs too relate with someone who has had too deal with multiple surgeries etc. instead of me. So I really do not know how too classify my tumors and have never been told. Hopefully this will be the last one I have too deal with. Are we still friends. Ron

[Jeff]

Ron,

I took no offense whatsoever I am certainly far from an expert regarding NF2. The way I look at my family's situation, we are just going through a bad stretch right now. I remain hopeful that we will have many peaceful, uneventful days after my upcoming surgery. At least then nobody in the family will have an acoustic tumor  My father had surgery when he was 32, 41, and 63. I wasn't diagnosed until age 36, and my brother was 31. So, I always thought that we were somewhat in the late-onset group. Oh well. I was just noting that it is all a matter of perspective. I guess we are both doing well to see that others have it worse I watch your posts and pray that your hearing remains stable and that your tumor shrinks. And I too hope that this is the last tumor that you must deal with......certainly still friends.

Have a good night,

Jeff

[er]

Hello Amber
Your in good hands with this group of people. I've enjoyed being here so far.
er