Hi

[Mark H]

Since there hasn't been much activity on yhis thread lately I just thought I'd say "Hi" to all the NF2 folks here. I'm doing good, still fairly minor symptoms with few problems. (if ya don't count a left hand with aouple jammed fingers I got trying to get my fire wood  stacked and tarped a few days ago. Typing with 1 hand is a drag. hee hee.   
Mark

[Raven]

Hello to all my NF2 brothers and sisters,

I'm still hear (oops!) I mean , here. Anyway since I got back on steroids a few weeks ago my hearing on the right side is back where it should be. Surgery for the left side looks like it may be next week, will know in a few days for sure. I'm feeling woosey all the time (sometimes it is really bad) and I only hear the tinnitus when I think about it, other then that I feel pretty good.

What's going to happen to my right side when I go off the Prednisone............Hmmmm...........a little concerned about that.

John

[Dealy]

This past week has been HELL WEEK. Trigeminial Neurilgia got worse-so bad that I had to go on Pain Pills lasd week> I got terrific shooters to the face and eye. Called JHH-they told me to see a local neurologist. Receptionist told me I could not see him until October 23rd. No way-so my wife worked me in earlier last week. Explained to me about NF2-well I already knew most of that-but I have small growths on my face. He asked me- How long have you had those"-I said about 10 years-He said-Did not anyone every tell you that is a sign of NF2. Never. So anyway he continues the Neurontin I am on and says if it does not get better he will put me on a small dose of Dilatin. What else-another pill. My cup runneth over. Well my regular doctor had me do a CT scan last week of my Sinuses-and yes now I have Sinutitus-so tonight I start powerful antibiotic pills-but it good be some cause of my Trigeminial crap. Don't you just love being an Nf2-so many medical opportunties you get. (Being Sarcastic of course). Well that's all I have too report-you guys take care. Oh and Raven- I hate too tell you this but MY STEELERS STILL Rock. I just had to through that in-Sorry. Thanks_Ron

[tony]

Yes - youre quite right of course the medical "collection"
possibilities are endless...
I was hoping for Berri-Berri and Green Monkey disease for Xmas !
I`d have the full set then....
Keep Well
Tony

[Jeff]

Hello all,

I am glad to see that some of you are doing well and sorry that some of you are not. I have returned to work full-time. And, I am spending my days working and trying to work out ways to communicate. My colleagues (I am a school librarian), and students have been very helpful and supportive. For this, I am very thankful. I still go to PT twice weekly, and continue to improve.

Being deaf is hard. But, there have been some comical situations. The other day, I went into a fast food restaurant to pick up some lunch. I placed my order to go, got my number, and waited. After seeing people who had been behind me get their orders, I began to worry. It just so happened that a tour bus of Japanese nationals had stopped just before I arrived.

So, a Japanese man and I were waiting for our orders when he starts pointing to the food and talking. I had no clue what he was saying. I do a fair job of lipreading English, but not when it is spoken with a Japanese accent. I replied that I was deaf, but I don't think that he knew what that meant. So, the manager came over and understood that he was saying that his and my orders had been combined and were sitting on a tray on the counter.

Finally, I gave the manager my order receipt, told him what I needed, got my food and left. I chuckled all the way back to work. I had no idea what this man was saying, and very little chance of figuring it out and vice-versa. You have to laugh.

Have a good one,

Jeff

[Dealy]

Jeff- I am so glad too read that you are employed and dealing with your deafness. That cannot be easy. My wife keeps on asking me if I want too apply for disability-Grant it there are days I feel like it but overall I would like too continue work as long as I can-even if I go deaf totally myself. My TN is getting better too the point I can at least eat and talk w/o having major shooters. I have been begging my ENT too look at my Sinuses the last 6 months-but he has always told me they are no problem. Wrong. The only thing-living in a rural area you cannot just dump one and find another just like that-so I guess I will have too live with some of his incompetence. This is the same guy who overlooked my NF2 condition for over 15 years-so maybe it's me that's the dummy for keeping him as my ENt. Well at least he is good at cleaning out my waxy ears but that is about it. Plus his audiologist give me my hearing test. Well enough griping for now-will not change one thing-so have a good day and again glad too hear about your employment. Ron

[Jeff]

Hi Ron and all,

You are right, being deaf is hard. However, going on disability would put a significant dent in my income. So, I trudge on.

When I was diagnosed in early 2002, I had perfect hearing, but doctors said to do two things: Learn sign language, an learn a new profession (I was a band teacher). So, I did both. I am sure glad that I didn't put off the job thing. I retrained and moved to a new position before I lost my hearing. I think that I have really benefited from this in two ways. First, I know how to do my job fairly well. And second, I built value in what I do so my colleagues know what I can do for them and they value this. This has motivated them to work to communicate with me. Another thing that I did that is paying big dividends is watching people's mouths while they talked when I could hear what they were saying. I also worked with a speech reading program that helped me to prepare for this. It is called Seeing and Hearing Speechhttp://www.seeingspeech.com/It helped me.

All of that said, being deaf is really tough in many ways. Being a deaf parent is difficult because I don't always know what is being said. Being a deaf teacher in a hearing world is difficult. So, I have contacted my doctors regarding getting an ABI. My family and I will weigh the risks and possible benefits, and then make a decision. I'll let you all know what we decide to do.

Have a great day!

Jeff

[Cheryl R]

Jeff, It is almost unbelievable to hear of you doing what you are doing after hearing this spring of your surgery not going as planned and with so many complications!            You are such an inspiration!                               I probably have been in a bit of denial about what is to come for me since the hearing is going on my good side.            Actually being able to understand people talking is going.      It amazes me at times that I can hear certain things well.               The phone is really getting hard.                  So today I did go to a deaf action center in Des Moines and got some info about phones and other signaling devices etc.      I haven't looked the catalog over yet.  They also offer sign language.                 The lady there was deaf so made it interesting with having to write it all between us.                         I also stopped at the Social Secutiry office recently to see what they said if they thought I would qualify for disability when lose the hearing but they weren't of much help.    I am thinking because of my age that maybe I would as am 55 now.           Even if can do a  CI and it  works am doubtful that I would be able to do the hospital nursing I have been.       I can't type without making mistakes in every other sentence so can't see me doing a computer job well.    All they said was to apply when I  couldn't work.         
Time will  tell how this all goes.                 
                                                  Cheryl R

[Jeff]

Hi Cheryl,
I am glad that you are inspired and that you are doing fairly well. Sometimes I think that I was fortunate to have gone from normal hearing to no hearing with no time in between. I haven't had to struggle to try to hear what people are saying because I simply cannot. I hope that your hearing holds out for a while.

Your experience regarding disability reminds me of my first meeting with my state Vocational Rehabilitation counselor. When I found out that I had NF2, I knew that it I wouldn't be able to continue teaching middle school band as I had for 15 years. However, the counselor told me that they really couldn't help me retrain until I did not have a job.......the very situation that I was trying to avoid.

In regards to equipment, I have found that I like using i711 online for making relay calls. I also have a Blackberry with a data only plan. These  things have really helped. I plan to get a CapTel phone so that I can use my voice on the phone, rather than my slow typing. I'll  let you know how I like it.

Jeff