NF2 has anyone been diagnosed with this disease?

[crystallady]

IF so, what is it, how does it get treated, how do you live with it?  I have to get tested for this because I have 2 tumors, an AN in my right ear and a 3.5 cm meningioma on the top left of my head. 

[Cheryl R]

There are 5 or 6 people on the forum with NF2.   Possibly more but that's all I can come up with at the moment.      I have the older adult onset of this and only have the bilateral AN's.        I have had 2 tumors though already on one side with surgery for both.  One was a regular AN and the other was a facial neuroma.        The small tumor on my good side is probably starting to grow as I am having some changes in my hearing.   I think treatment is more of a case by case type depending on what tumors you have,size and location and how they are affecting you.     I go back to my doctor in Jan and will be quite interested in what he has to say this time.       One needs to find a doctor who has experience with NF2.               Hearing preservation is important when you have already lost hearing on one side.                 Some of the others have ahd more treatment than I have had and hopefully will post also.
I have had no other testing other than a spinal MRI.                            Cheryl R

[Jeff]

Hello,

I was diagnosed with NF2 when bilateral acoustic tumors were discovered. At that time (5 years ago, age 36), I found out that I inherited this from my father, who had bilateral ANs and is deaf. His doctors never even mentioned NF2 to him. Upon my diagnosis, all of my siblings were screened via MRI and my brother was consequently diagnosed.

While I am certainly not an expert, I will share what I have learned. NF2 patients can differ significantly in the severity that they are affected. I know some who were affected in there early teens and were deaf by their earl twenties. I am 41 and still have good hearing in one ear. Some have numerous tumors in their head and spine while others have only bilateral ANs. My family seems to have a pattern of relatively late onset. My father's first AN was discovered when he was 29 and my brother and I were in our 30s. My father and brother have only bilateral ANs, but I have numerous spinal tumors in addition to my ANs.

NF2 patients have many choices to make regarding treatment. In addition to choices for AN treatment, they may have to make choices regarding treatment of spinal tumors, which can indeed cause significant deficits deficits.

I'll end by suggesting that you read this excerpt from Neurotology. It gives an excellent overview of NF2. http://www.advocurenf2.org/01_understandingnf2.html

Please feel free to contact me if I can answer any other questions. I am sorry that you have to even consider this.

Best wishes,

Jeff

[Mark H]

I'm 53 and was just finaly diagnosed with the bilateral AN's this year. I've had the tinnitus, headaches, and balance problems for years, but it was just the last couple MRI's that showed anything. As of the last one they are both about 2mm, so I have plenty of time to waiit and se what happens. I'm due for my next MRI next week, so I'll see if there's been any changes. 
Mark

[Dealy]

Crystallady- Another NF2 here. I had my first AN in 1988 on my Left Side. Had surgery to remove-which left me deaf in that ear. In 2005 my face when numb at work-Yup-another AN-this one on right side . Measured at 2.4CM. Searched Internet for 3 months. Talked to NF2 from Texas who had FSR for 2 Bilateral AN's-5 and 6 years ago at Johns Hopkins. Decided that is what I wanted to do also. They have a protocol from Germany-25 sessions over 5 weeks. Control rate not affected by NF2. However size limit is 3.0CM. Had 6 month MRI on 12/26/06. Tumor had grown in a year to 2.7CM. I am Six month out from FSR. Hearing-posted yesterday went from 96% to 90% in 3 months. Also had partial Spinal scan yesterday. They had a new Tech running MRI machine. Took her 1hour and 15 minutes just to do just to do my neck. Suppose to have middle of back done on Friday. Good luck on your decision. Looks like only recourse for you though is surgery. Will keep you in my prayers. RonP.S. Look for results of 6 month MRI when I get will post on this forum.

[tony]

Sorry to hear of your troubles - there is the "NF2 crew" which is a support group like
this but nearly all NF2s etc
In regards treatment try to deal with those who know - your condition
(my condition too) is so rare that it is possible that your doc may
never have actually seen one before
There are dedicated NF2 clinics - they will know what to check etc
Finally if you use the search function under NF2  on this group
you will see other posts etc
best regards
tony

[crystallady]

As of yet, I haven't lost any of my hearing, in fact, I have very few symptoms because of the AN in my right ear.  On occasion, i get a ringing or "water in my ear" sound but .. thats maybe once a week at the most.  I am getting tested for NF2 on 1/10 but have really no idea what this disease is other than bilateral tumors.  Is that the only symptom?  With NF2, do you constantly get regrowth of multiple benign tumors?  I dont believe i have this disease because no one in my family has it and I have a meningioma on my left side and AN on my right side. 

Cindy

[Dealy]

Cindy: There is no one in my family that has this cursed disease either. As a matter of fact-the doctors at Johns Hopkins were quite amazed. Apparently I am the sole called founder in our family to my knowledge. But the buck most likely will stop with me because my wife and I never had children. I used to feel bad for that and still do-but from my limited understanding you have a 50% chance of passing this on to your children. I have read other sites where children as young as 9 years old have gotten Bilateral AN's. Mine apparently was latent since I am 57 years old. My inspiration has been a lady from Texas who is an NF2 and had FSR 5 and 6 years ago. The first one was the good hearing ear she still had and the 2nd a year later was the ear that lost all the hearing. Both AN's are dead and shrinking. She has 40% hearing with hearing aids in the only hearing ear. I wish she would post on this site more-but she does not. I e-mail her for advice and input once in awhile. Her is a lady that survived and beat this disease. (Up too now at least). I am sure other's have stories they can add-good or bad. This afternoon I have to go have my final spinal scan looking for tumors on my middle back. I guess I really did not answer your question much. I know though there is two kinds of NF2-Aggressive and MIld. Some on this site say testing proves nothing even though at JHH they advised I get genetic testing. I did not know for what because I already knew I had 2 tumors in my life time-so now I am labeled an NF2. Am I or not. Well good luck-and know you have other's like you on this site-rooting for you of course all the way. Ron

[Cheryl R]

Dealy,     Nita has had further hearing loss and in Oct was the receipent of a Cochlear Implant and I think this is a first for this as she has had the radiation and supposedly they aren't supposed to work.
I guess she is having moderate success as of her last posting.    We are both on the www.anworld.com site and she posted of her experience there.           If you want to personal message me with your email address I can send you some of her posts about the experience as I have saved them.                  My surgeon has mentioned this for me but i will need more info before I would agree to that.   I have had no treatment on my good side yet.         I also appear to have no family history of the NF2 but my parents died when I was 21 so can't say 100% for sure.   I am 54 now.            I have 2 grown daughters and one has been MRIed and was ok.       
                                       Cheryl R

[littlemissrory]

I have another question to add to this thread.  In NF2 patients are there always bilateral AN's, and what type are the spinal tumors?  Are the spinal tumors ever hemangiomas?  Thanks for any input.

Cheers,
Rory

[tony]

The spinal tumours are less commom - and in the main less trouble,
some are never discovered, some, discovered, remain *watch and wait*
and never require treatment
Surgery is more common on the spinal tupe tumours
They are still schwannova type tumours - made of nerve sheath cells
best regards
tony

[Dealy]

Cheryl-I talked to Nita just a couple of weeks ago-was going on a trip to Cancun. Indicates her CI is working much better and she really like it. Needed to fine tune it I guess. Tony- I had finished my Spinal Exam yeasterday. Techs told me if they see anything suspicious they will use contrast. When I was done said that MRI did not see anything but they do not have the final say of course. Today we have ice and very cold out-100% humidity. I feel like I have 10 socks in my AN ear. Really hard to hear today. Have not heard from JHH yet concerning my 6 month MRI scan. Assuming now that will not be till next week or later. Ron

[Timjk]

I was diagnosed with NF2 just last month. I am 52 and I was in a car accident in 1990 which caused tinnetis in both ears. I was also diagnosed with a form of Muscular Dystrophy back in 1983. This is where my story gets complicated. I was adopted at birth,so any family history knowledge was impossible. I found my birth family 13 years ago and was told one of my 3 sisters has NF2. I never put two and two together with my symptoms. I now believe the ringing in my ears is being caused by bilatteral AN's.I also suffer from severe hearing loss and wear hearing aids in both ears. I had an MRI done last month because of sciatic nerve pain in my left hip. This is where they discovered the NF2. I have 3 spinal tumors in my lumbar/sacral section of my spine. 2 of them are 3 CM.  and the third is 4.5 CM. The 15th of Dec. I had the rest of my spine plus brain MRI done. They found AN's on both nerves left and right. The left is 12 MM. and the right is 3.3 CM  X  2.9 CM. and is pushing against my brain. I am scheduled to see doctors at Moffitt in Tampa on Jan. 8th. To answer your question on NF2 information, I found Webmd.com to have very good information. I searched
"syrinx" and then clicked on the first subject title. I found the information there very helpful. It is funny how something thought to be very serious as spinal tumors suddenly pales when you find out you have AN's.
       I hope I have been some help.

           Tim

[ppearl214]

Hi all,

Trying to get an idea about how many NF2's currently are active on the site and idea of setting up an NF2 discussion forum.... please see link:

http://anausa.org/forum/index.php?topic=2793.0


Cheering you all on and sending new year huggles.
Thanks!
Phyl

[Cheryl R]

Sounds fine to me to have a NF2 section as looks like there is more here than I thought.    I need all the info and experience of what the other NF2ers are doing that I can get.     I did recently join the NF2 crew also but haven't got to really know anyone much there yet.
                                                Cheryl R