When did you found out?

[Platypus]

Being called a "newbie" sounds so funny, since NF2, MRIs and trips to the specialists have been part of life since 1989. It is great that there is now a forum, there wasn't when I started out. I got the newsletterfor awhile, but didn't feel like I fit in with the people who were writing in. Everyone only had one tumor and they were much older then me, when the their tumor was found. I was a 19 year old college freshman, who had to wait until after Christmas and New Years, to have a CT that showed to two spots. The left side spot was bigger. April 1989 when my specialists went in to remove the tumor on the left, they found that it had it's own blood supply.  Because of that I was under for 15 hours, not 7 like my specialists had planned. In 1994, I was part of the FDA study on the ABI. It was placed on he left side. I also started having dry eye that year. I still have the tumor on the right, which hasn't change much over the years. My hearing on the right has been getting worst, but way better then they said it would be back in 1989. They said I would have five more years hearing on the right. Ha, I showed them. Losing hearing and balance on the left as a teenager, before the tumors were found, was much easier then it has on the right, as an adult, because as teenager I didn't know what was happening and my body learn to deal with the lost on it's own. I still have dry eye on the left, but wiithout the need of weights to close it. 

[Dealy]

You always know when you are in the rare group when you get 41 looks and no reply. Another NF2 here. Here is my story. My first AN was in 1988 at the age of 38. No forums like this-so no one too talk to at all MY first one was 1.5CM-no evidence of any other. Had it surgically removed in Kansas city-8 hour operation. Left me deaf with no problems from surgery. Surgeon told me not too worry-so After I adjusted to the deafness in that ear I did not worry. Now this is stupid but I never had a MRI thinking I would never see one of these things again.WRONG. Fast forward to 2005. Sitting at work one day and my face went numb on the right side. Only prior symptoms was a kinda fuzzy hearing sound-no balance problems-aliitle headaches once in awhile. Had 100% hearing with loss only in the 4000 Hertz range. Sad thing is I had been going to ENT for years and even with the high frequency hearing loss he said it was no big deal.WRONG. Anyway-MRI confirmed a 2.4CM in right ear. Oh my God I freaked out. Doctors were calling me an NF2 which I had no idea what they meant. After searching Internet for 3 months-I decided on FSR Radiation at Johns Hopkins. This was mostly based on another Nf2 who had FSR at Hopkins back in 2001 and still has 40% hearing in one ear and tumors are dying. I am now 8 months out and hearing is like I have my head under water all the time. ENT in KC that did my surgery 18 years ago wants us to come too KC and explain why hearing is such and fit for a hearing aid-so that is what we are going too do on April 6th. I would have been totally deaf with surgery-for me the ABI was out-so I can still hear but do not know how long that will continue. I am now 58 years old-so I guess I had almost 20 good years of one sided hearing. I kinda have too laugh to myself when folks on this group have one sided hearing-heck I considered that normal and would do almost anything to have that back. You do not know what you have until you lose it. Well that's my story from another NF2. Sorry it is soo long. Ron

[Sue]

Hi Guys,

I would like to comment on this, but I guess I'm embarrased to, because I do moan and groan and feel sorry for myself with my problem...and it isn't anything compared to what you two have to contend with.  I wish you the best of luck with your treatment and recovery.  And I have made a pact with myself, and I'm going to try to remember to keep it.  It has been a year since my diagnosis, and after wallowing around in self pity for 12 months...I'm going to try to climb out of the mud and clean myself off, and try not to get dragged back into that pit again. This is what it is, and that's all there is to it.  You guys make me ashamed of myself, although a pity party certainly is understandable for all of us! 

Kindest regards,

Sue in Vancouver USA 

[Dealy]

Sue-one thing-when you get too be an NF2 you get a whole lot of reads but few replies. Anyway-no need on my part at least for you too be embarrased about your loss. A loss is a loss no matter how huge or minor it may seem. This may be the  wrong place too post this perspective but last night in our home town paper they have a weekly column called AT RANDOM. They pick people in town and relate a personal story about them-it is not always medical though. However-last night was a story about a local man who had a major stoke 7 years ago. The doctors told him he had no chance to live or function-so they suggested his wife put him in a nursing home and that is it. He could not even talk-swallow-or sit in a wheel-chair. His wife said no-I will take care of him and so she is-HUGE TASK. However-she loved him enough to make that sacrafice. Today he is able too walk some-he still lives at home-he cannot talk-but she says we still find happiness and we love each other. So that made me think. You know I can still see-I have a loving wife- I can still walk and talk. The only drawback-just cannot hear that well. So like you-sometimes we just have too set back and count our blessings. That article was such an uplifting story. I was feeling kinda down and feeling sad about my loss of hearing atall-but hey I still have other faculties I can use and carry on. Thanks for your reply Sue-and God Bless you and yours.Ron

[Jeff]

Hi,

My story is not unlike others here, except that I am 2nd generation NF2. My father had an AN removed in the early '70s. There was no mention of an acoustic tumor on the other side. 9 years later he lost most of his hearing and then the other tumor was discovered and removed. He is now deaf. His doctors never mentioned NF2! So, I went along in my life, studying music education, and then teaching middle school band for 15 years. However, I began to have headaches that became more and more frequent. I was treated for allergies and sinus problems, but nothing helped. Finally, my headache became constant, so I had a CT scan that revealed bilateral tumors. The radiologist pulled me in to his office and showed me the scans. He said "Let me start by showing you what a normal brain looks like." I knew I was in trouble then! Then he showed me my scans. I asked if those were acoustic neuromas. He was surprised that I knew. I told him that my Dad had them. He explained that NF2 can be genetic and that I had inherited it from my father. My siblings then had MRIs and my youngest brother was diagnosed a few weeks later. I have since had 2 AN surgeries and a 3rd one scheduled for next month. Last year I found out that I have numerous tumors on my spine. So, the adventure continues.

Sue - I agree with Ron. Don't feel bad for not liking what is happening to you. I have said many times that I wouldn't wish one of these tumors on my worst enemy. The things you deal with are real and unpleasant. There is no denying that.

Ron - I too am thankful for my wife, family, and my ability to function. Their support has kept me going. Indeed, we will have a family reunion of sorts at House next month. I will have surgery and my brother has appointments for his ABI maintenance. So, we will try to make the best of this.

Best wishes to all!

Jeff

[FlyersFan68]

Platypus,
 I've read about the ABi and was wondering if it has helped any. Also, can that model be replaced by the PABI which has a few more channels. I think House one day will have even better solutions for bilateral deafness. I'm glad your here and I hope more NF2 join. I know you guys probably have a seperate forum but an acoustic neuroma is an acoustic neuroma whether it be one or two.

[Jeff]

Hi Flyersfan,

Sorry for butting in, but I have just spoken with House regarding the ABI and the PABI. I got an ABI during my last surgery (Dec 2003), but the electrodes moved on my brainstem sometime after the surgery, so it gave me no sound sensations. So, I will get another implant next month when I have my other tumor removed. I discussed the PABI with them, and they said that they deem the project a failure. Less than 30% of all the penetrating electrodes have given auditory sensations. The PABI also has fewer surface electrodes (12 as opposed to 23). Since this is my last chance, I will get the I will get the ABI because I think it gives me the best chance for some hearing. My brother got an ABI last year and says that it makes a huge difference for him. Thanks for your support.

Jeff

[FlyersFan68]

I really thought that some channels on the PABI was gonna enable some users to hear speech. I would guess they have something else in the works. Just Curious - What can one expect from the ABi?? What benefits does your brother feel are most beneficial?

[Jeff]

I really thought that some channels on the PABI was gonna enable some users to hear speech. I would guess they have something else in the works. Just Curious - What can one expect from the ABi?? What benefits does your brother feel are most beneficial?

I talked to Dr. Hitselberger about the PABI. He is one of the principal investigators and has implanted all of the PABIs thus far. The premise is that by using electrodes that penetrate the cochlear nucleus of the brainstem, stimulation will provide a wider range of frequencies or pitches. It is the lack of a wide range of frequencies that has not allowed for speech discrimination. However, this theory has not proven to be true. For most of the PABI users, speech discrimination isn't much better than ABI results. House is also involved in investigating a device that stimulates the midbrain as opposed to the brainstem, but preliminary results, while successful, have not been any better than the ABI.

When I decided to get an ABI 3 years ago, House sent me a video showing 3 ABI recipients. In the video, it is stressed that hearing is not the same. They state that the ABI allows a person to hear environmental sounds. They also say that one of the main benefits comes when hearing is combined with lipreading. The test scores using a combination of ABI and lipreading are significantly higher than either tested individually.

My brother has really benefited in this type of communication. He is able to understand nearly all of what his family says when conversing face-to-face in a controlled environment. His wife enjoys the improved communication too. Additionally, he uses voice carry over (VCO) phone. He can can listen on the receiver and hear when the other person stops talking, which helps conversations to flow more normally. Generally, communication is easier...still tough, but easier.

I hope this helps,

Jeff