I should buy a lottery ticket

[Raven]

After two weeks of lurking I thought maybe it was time to join. Here is my story...........woke up one morning about three weeks ago and couldn't hear properly out of my left ear. Went to my regular Dr. and he removed a big wad of ear wax, I had never had problems with ear wax, really didn't think anything of it until the next morning when there was no change in my hearing. Went to a ENT, my left ear failed the hearing test big time. she prescibed  steroids for ten days and ordered an MRI just to rule out the very slim possibilty of something else. She did not go into detail about the something else but did say it was rare. Come back two weeks later with a little improvement and MRI in hand. Well she looks at the MRI and starts explaing about acoustic neuroma, I stop hear after about a minute and say........should my wife be hearing this, the ENT said I will go get her. Continues explaining about acoustic neuroma, now we are getting a little concerned. She has the MRI up on the screen and is showing us the AN, she said about 1 in 100,000 people get these and goes on to say that I have one on the other side as well...............must have been my lucky day, I asked her if I should buy a lottery ticket, made us both laugh a little. Don't have the actual sizes of these aliens (paperwork at home) but I do know both of them are less then 1cm x 1cm. I will get the real numbers and post later...........Oh I have been looking all over for the statistics of how many people are bilateral, anybody know?

Anyway, going to my first visit tomorrow with the Dr. at University of Md. Medical. I guess I will find out alot more tomorrow.

Thanks for listening

[Joef]

Yea me too .. I was not really that concerned .. that is until I saw my MRI .. and thought .. "what is that baseball doing in my head!"

bilateral AN's? ... thats rare for AN people to get... so its rare of the rare...(if that makes any sence!). Did he say anything about NF2 ?

[Jim Scott]

Hi, Raven:

Sorry that you have a reason to be here but now that you are, I hope we can be of some help to you, at least on a practical basis.

Acoustic neuroma tumors are rare and having bilateral AN tumors is even rarer, but, obviously, do occur.  This condition is usually described as Neurofibromatosis 2, or 'NF2' for short.   

The statistic I've read says about 1 in 3,000 people are diagnosed with NF2, annually. That's makes the condition extremely rare.   You will undoubtedly be a candidate for radiation therapy - but only a qualified physician can make that judgment.  I wish you all the best as you deal with this - and stay away from lottery tickets.  You aren't all that 'lucky'.   

Please feel free to visit here anytime for information, support and encouragement, as we are able to provide it.

Jim

[Dealy]

Raven-Welcome too the exclusive NF2 club-. Actually no one one's to join this club including myself. However I am also an NF2. Here is my story in brief. In 1988 an AN that was 1.5CM was found in my left ear. I had it surgically removed. Only problem one sided deafness which I readily adjusted too. I was told this was an isolated incidence so -and yes this is stupid-I never had another MRI-ever. Now fast forward too the year 2005. I was sitting at work one day and my whole right side of my face went numb. Went to local Hospital emergency room and was told I had a sinus infection affecting the facial nerves. Wrong. Decided to go too local ENT who had I had been seeing every 6 months anyway to clean ear-wax out of my one good hearing ear. He never said anything ever about getting an MRI before so I never got one after my surgery in 1988. EVER-HOW STUPID. So he orders an MRI this time. You guessed it. Another AN on my right ear at 2.5CM. Now I am an NF2 and never knew it. The thing is I threw my film away and so did the local hospital that did my MRI in 1988. So my surgeon in Kansas City wants to remove it and apply a ABI brain stem. I told him no-I want too explore my options. I decided on FSR treatment at Johns Hopkins after talking to another NF2 in Texas who had FSR radiation in 2000 and maintained hearing even though it fell too 40%. I thought-that is better than nothing. The AN was monitored for a year and a half until evidence of growth was apparent last year. So I opted for 25 sessions of FSR at Johns Hopkins in Baltimore. I just had my annual MRI on June 26th of this year. I have posted under AN issues the results. Look under my handle Dealy and one year FSR Results. My hearing is down too 50%. I was told I have 30 Decibels left too spare before I am tottaly deaf. I can still hear with a use of a hearing aid but things are not clear and voices sound very tinny. I started out with 100% hearing in 2005-Go Figure. Well I can'T win the damn lottery but I can get a rare AN. I know this is hard too bear but their are other NF2's on this site. Yours is still awful small so surgery can maybe be an option to save hearing perhaps. I had no option but to go with Radiation and take my chances it will kill this thing w/o taking all my hearing. Best of luck and please keep posting and keep your so called chin up. I have dealt with mine now for over 2 and half years. Thanks Ron.

[Raven]

Thank you all for the warm welcome...................first things first, here are the specs on the intruders, left side - 1.1 cm x 0.5 cm, right side - 0.8 cm x 0.7 cm. Also a 0.8 x 1.1 cm at the left posterior base of the pituitary gland (have not done any research on that yet). The left side is the weak side, right side has acted up a few times in the past but has always rebounded. The tinittus however is DRIVING ME FREAKIN' NUTS!!!

Bruce, I did not know where to start, that is why I posted here. I guess I'm kind of trying to side step the issue of NF2 (I love my two boys), maybe you know, because I'm bilateral is it a pretty much given that I'm NF2.............what are the long term issues? I will look around the NF2 page.

Ron, you have been thru alot. I'm in the Baltimore area , actually starting with a Dr. at University of Md. Medical tomorrow, Johns Hopkins is a few blocks away. The AN stuff seems intense on it's own, but the NF2 looks like another level. Wow, I wasn't expecting more fuel on the fire, two ANs is enough, but NF2 to boot...............I'm buying a lottery ticket

[Raven]

Thanks Bruce, I'm starting to realize just how serious this is, but your reply did put a dose of comfort in me................ I feel like I'm not firing on all cylinders, it's like my energy level is only at 80% and sometimes I feel like I just drank a few beers on an empty stomach, kind of a woosey feeling, is this normal?

Anyway I'm off to University of Maryland Medical System, I will ask my Dr. about NF2, why I'm feeling this way and a ton of other things. I will report back Monday evening with what the Dr. said..............going down the beach for the weekend, unless the Dr. has other plans for me.

[Joef]

Sorry to say it is normal... when I finally had my surgery... I felt like 5 or 6 beers... (and belive me, I know what 6 beers feel like  )

and the energy levels get worse and worse.... my guess is the body has to so much more work to keep itself balanced (and uipright!) .. energy goes down fast...(becasue your doing twice the work of a "normal" person my just standing !

there is a NF2 gene test.... does anyone it your family have "Neuro Fibromatosis" ? see: http://www.anarchive.org/nf2.htm

[Betsy]

Hi Raven,

Joef's right...what you're feeling is normal.  It's stressful enough to adjust to the idea of having just one AN, and you're faced with two plus the other one.  The feeling you describe (beer on an empty stomach) is all too familiar.  Has your balance been affected at all?

Are you seeing Dr. Eisenberg at UMMC by any chance?  I consulted with him in June and I think he's wonderful.  He was worth traveling almost 200 miles to see.  He spent a LOT of time with me, showing me pictures of ANs in medical books and answering every single one of my questions.  He did not push me in any particular direction.  I especially liked it that we talked in a conference room, not an exam room.  Although I eventually decided to have radiation treatment closer to home (my doctor here is wonderful too), if I ever need surgery, Dr Eisenberg's the one I want to do it.

Enjoy the beach....you deserve a rest!

Betsy

[Rc Moser]

Well, I buy lottery tickets all the time! and it hasn't done any good so far . Sorry to hear you have now joined the club nobody wan't to be in. All I've got to say is read, read , and read about these little burgars...Hopefully they are slow growers so you will have time to deside on whats the best way to deal with them... Again sorry to here.  Rc.

[Raven]

Betsy,

I consulted with Dr. Eisemen at UMMC, I can tell you he made me feel really comfortable, explained evrything and I walked out of there feeling alot better then when I walked in. After thinking about it all weekend it became a no brainer (pun?) to go ahead with surgery, Dr, Eismen explained since both of my ANs are small that there is a great chance the remaining hearing in my left ear can be preserved and a possible cochlear implant down the road (if needed).  I have another consultation set up for Friday and Dr. Eisenberg will be part of that as he will doing part of the surgery.

The AN on the right side is not a problem at this point in time so Dr, Eisemen is recommending wait and watch. He does want me to get an MRI of my spine for possible NF2 stuff............. Looks like I may have a long journey ahead of me, thinking about keeping some knid of journal documenting this.

Actually feeling pretty good today, no feeling of being in laa laa land, I was kind of getting used to it, maybe I'm not as stressed out now that I have a plan................I'm sure it will be back, as for the darn Tinnitus, will it ever go home. My balance has not been affected at all.

[Mark H]

Raven,
I'm another bilateral ANer. So far mine are staying real small, about 2mm each as of my last MRI. I also have some neck and spinal tumors but aside from the tinnitus, some balance issues and a bit of pain in my neck and back and the coccasional headache I feel great. As long as everything stays nice and small I'm not going to worry about anything. I've never been able to be serious about anything for more than about 30 seconds anyway. A few uick things about NF2: it affects about 1 in 40,000 people. About half the cases are spontanious mutations, not inherited. And a person with NF2 has a 50% chance of passing it on to children. I'm one of the lucky ones. I wasn't officially diagnosed with the AN's 'till last year. I'm 54 now and if things stay small I might never have to do anything. The only ones that have me mildly concerned are the ones in  my neck. THose I might have to do something about, but I'm in no hurry.
Mark

[Dealy]

RAVEN; So glad to read that you came to a conclusive decision on treatment with your doctor's in Maryland.  We have friends in our home town-their son had a 1.2CM three years ago. He had surgery in Kansas City and they saved his hearing-of course he was not an Nf2-but their is hope and it is possible. Here is hoping and praying for your successful outcome on surgery and that hearing will be preserved. I find myself more each day becoming more difficult to hear even with the aid of a hearing aid so that is NO FUN at all. Most people take for granted that you can hear just as good as they can. This is what I struggle with at work. My coworkers will talk too me and if I say "what did you say"-they may or maynot repeat themeselves and usually end up just ignoring my request as if it's my fault for not hearing them in the first place. Very frustrating. Takes patience and endurance to deal with all when you have an AN I guess-Thanks-Ron and Take Care. Will be Thinking of you and Praying for a Good Outcome.

[Raven]

Ron, Mark

I'm fortunate to live in the Baltimore area (can you tell by my screen name?) with Johns Hopkins and University of Md. Medical at my doorstep. Since I'm 48 my Dr. is recommending surgery, to preserve remaining hearing. I will still have the one on the right side, I guess I will always be thinking........when it that one going to be a problem, not to mention the real little one near the pituitary gland. Oh and then what about the MRI of my spine, maybe there won't be anything there, I do need some good news.

Mark, do you know for sure you are NF2?

A month ago I never heard of acoustic neuroma, I was cruising along and everything was good. Now I have good days and bad days, the tinittus is the worse thing about all of this right now, no balance issues at all, but like I said before my energy level is down and the little things just don't seem important right now. Thru all of this I have never said "why me", it is just the hand I've been delt, I guess it could be worse.

[Mark H]

Raven,
I was diagnosed with NF1 30 some years ago. I've got the lumps and bumps, CAL's, lische nodules, all the stuff that goes along with it. For about 5 years my MRI's have been showing something in my head other than the tumors that were already there, but they were just too tiny to say for sure what they were. Last year they finally started calling them  acoustic neuromas. Since it would be such a rarity for someone to have both NF1 and NF2 I've asked several times if they are sure what I have are bilateral AN's and have been told that's what they are, just real small onnes so far. One other NF2 symptom I forgot to mention,(I'm always forgetting about it) I did have a cataract removed from my right eye when I was 49, which is kinda young, but another sign. It seems I'm just one of the real lucky folks to be mildly affected, which is just fine with me. I mostly hang out at a couple NF boards and sometimes part of me says it doesn't seem real fair that I'm so much less affected than a lot of my friends.
Mark

[Dealy]

Raven and Mark H.-MarkH.-When I read your reply-it also dawned on me (Duh) that I also have Cataracts in each eye that are stable at this time. Also-and my spelling will probably be wrong-but I also have Peripheral Neuropathy in my feet. They feel numb all the time. I was tested last year and it is related to the Nf2. Also had Spinal MRI last year of entire Spine-no sign of tumors. Thank God for that. My mother when she was alive (She died in 1996 of Alziemers) always said to me when I had my first tumor removed in 1988. "Well it could be worse". Well it her case it was-she died with the inability to comprehend or realize what was going on. Now my older brother has it. So yes it can always be worse. Take Care_Ron.