I'm an official member

[Raven]

After finding out two months ago I was bilateral, I was holding out hope that maybe I wasn't NF2 (yea, right). Well today when my Dr. looked at the MRI of my spine and showed me five small tumors and one larger tumor, I said to him, "I'm NF2 for sure, aren't I".......he just nodded. I'm not the worrying type, but I am worried about our 9 and 13 year old boys, we will deal with that later. As for me, the reality of possibly being totally deaf has not sunk in yet. My left side has been just about useless since this crap started two months ago. My right side went down some, got back on steroids, came back up, got off steroids and is now down again. Hearing is very difficult right now and I'm thinking the end is near. I'm starting to feel a disconnect from the day to day because I can hardly hear.  I'm going back on a stronger dosage of steroids starting tomorrow to hopefully bring the right side back up, then we will decide what to do. Originally I was going to have surgery to remove the one on the left side, but things have changed since then. I'm not asking any questions in this post, just wanted to say I'm an official member of the NF2 club now.

John

[marg]

Oh John..... what can I say....except ....I'm so sorry you are dealing with more than a double  whammy .   I hope the steroids help again and you have some doctors who can give you the best possible help.  I know that there are some other NF2 people who will respond to your post soon.... in the mean time.. just know that you have been heard and I will be praying for you. I wish there was more that I could do.
Margaret

[tony]

Yes - a very dark place for sure - I am there already
so I know what you must be thinking
Can I offer a few basic practical suggestions
Firstly - lipreading - a basic understanding will help you immensely
both now and if and when things get more serious
Generally it is said you learn quicker and better while you still have some hearing
You can practice at home with the TV on low vol - watch what they say etc
Best to get proper lessons as well - meantime an amplified phone will help
Second you will need some kind of follow up care
a kind of annual check-up for some while now.
Its probably best to deal with folk that have experiance of the issues
at one in 40,000 its a rare condition - so not many clinics are qualified
The same is true re any genetic checks or issues
Its just possible you are someones first NF2 patient - look for experiance
Third - Mental state - the issues are real enough - some 50% of NF2s
suffer from deppression - be aware of this and search out the support services
Fourth - some of the gamma knife options seem to offer the chance
of retaining some hearing for 10 yrs or so
Again deal with the experianced
- depending on size/location/existing situation etc - not a bad compromise
Finally I have some stateside contacts who are with the NF2 CREW
I could pass them over on a private note
Sorry, I guess your head must be spinning at the moment
I hope this helps you
Best Regards
Tony

[Dealy]

Thank you John for giving us your real name-better than Raven I think. I know though how you feel. Some days I think that it really isn't real that I am an NF2-but in reality I know I am. The only thing that gets me through is Prayer. My hearing seems too be crashing more and more every month and a half. I had too have my hearing aid readjusted again this morning because some sounds were just too loud and tinny. Audiologist said-damage too hearing nerve. of course I knew that-but I fear going deaf but that is most likely going too be the case in the future at the rate I am crashing. Sometimes it is good too vent one's frustrations-even though not one person can change the outcome. I am so sorry to hear that they found tumors on your spine now. I had mine done last year and was told their was none to this point at least. I am now on Neurontin to control electrical shocks to my face from my Trigeminial Nerve. Seems to be working. Last weekend I could not even talk or eat again. We talked to Johns Hopkins last week and they just said it is irritiation from radiation to that nerve-we though maybe the tumor was sweliing again. It swoll this spring and then is decreasing in volume from radiation. JHH said they only swell once-so nerve damage is not from swelling-thus no Steroids. Well John-I feel for you and will keep you in my Prayers. This is not and easy thing to accept. My wife always says-a day at a time-that is all we can do. Take care John-will be thinking of you. Keep us updated- Thanks Ron

[Jeff]

John,

I am sorry that your recent spinal MRI confirms that you have NF2.

You mention spinal tumors. Are any of them causing problems now? I have many tumors but most are very small and none are causing a problem.

As he always does, Tony makes some excellent points. I especially agree with his point about lipreading. Having recently become deaf, I am particularly happy that I made a conscious effort to watch people's mouths when they spoke to me. I think that it has paid big dividends for me since I lost my hearing completely.

I too have a child that I worry about and that is difficult I am sorry that you have to deal with those concerns.

Please let me know if I can help in any way.

Jeff

[Obita]

Dear John:

I also want to tell you how sorry I am that you have found out that you are NF2. 

The NF2 posters on this forum were diagnosed years ago.  They have such a positive attitude and much to offer.  Please
keep in touch with them for emotional support as well as practical advice.

I am here for you too if you need to vent or talk to someone.

Kathy

[Raven]

Thank you all for your responses, don't know how this is all going to turn out but I'm trying to stay as positive as I can, but it is hard sometimes. I'm gratefull to have found this board and all the wonderful people on it, although the boating forum I belong to is much more fun. Tony, I have already started to watch peoples lips when they are talking to me. I sort of hang on their every word, if I don't I loose track of what they are saying. Ron, sorry to hear of your situation, I hope you get better. My Dr. says as long as the tumors on my spine aren't causing any discomfort, we are just going to watch them for now. Finally, I'm a die hard Baltimore Ravens fan, thus my screen name............LOL........our boys even named one of our cats Raven, the other one is named Oriole.

In one of my first posts I had asked how rare being bilateral is, well I searched all over the place and kept seeing this number.........only 5% of people diagnosed with AN are bilateral, pretty exclusive club I think.

Take care evrybody and I will talk to you soon

John

[Cheryl R]

Hi John.      I keep wondering how I got so lucky to be in that 5%.           I get so frustrated to hear people talk to me and it just sounds like gibberish part of the time.   Most of the time I manage ok but it is embarassing.     I notice I am trying to watch peoples lips now but lip reading isn't as easy as it may sound to do.         The phone is giving me more trouble.     I have been putting off looking into the captioned phone.                  Work is what is worrying me as when is some co worker going to complain about me.
One doesn't think about how much small talk one does when you are out and about and how is it going to go when and if one can't hear at all.       A cochlear implant may or may not work someday so have to plan for in case it doesn't.                   I already smile(or half smile in my case) and answer clerks with hopefully the right answer to what they were saying.         Paper or plastic?? 
   Yes I am fine today.       Oh what did you say?     
     I mention occ to my almost 4 yr old granddaughter  that grandmas ears don't always work too well so it won't be a shock to her when they don't some day.          I have already got the answer back, well just talk louder.           (A side note,   she also started preschool this week and told her father when he took her " You go away now daddy" )       
I had no spinal tumors when was checked 3 yrs ago.   I hope that continues.
This should probably be under the venting section but oh well.              I do the day by day thoughts as well and some days are better than others.
                                               Cheryl R