An old newbie has questions

[oldewoman]

I'm just coming back to the boards after a long absence, and I'm unfamiliar with some of the terms I see. My AN was removed 15 years ago via craniotomy; gamma knife and such treatments did not exist then or were not in common use. Watch and wait was not an option for me, as they didn't even know it was an AN pre-surgery, just that I had a brain tumor and it was coming out as soon as they could schedule an operating room. Anyway, what does NF2 mean? It seems that my "treatment" post-surgery (which amounted to "Bye, have a nice life") has also been very different from what most people experience these days.

Btw, I am 100% deaf in my right ear and had facial paralysis on my right side following the surgery. I have had four surgeries on my right eyelid, the last three to repair the damage caused by the first one, just days after my brain surgery, in which my eye was stitched partially shut. (It looks reasonably normal now.) The paralysis has improved over the years, but no one told me it would or to have therapy for it, which would probably have helped.

Anyway, sorry to be going on and on, I don't much get the chance. Thanks.

[Joef]

NF2 , its a problem with growths on all the major nerves... mainly on the spinal cord. and AN type growths .. they are not cancer .. but are a REAL major problems since they keep coming back ....

There is dna test for NF2 .. and runs in familys...

[oldewoman]

Is it neurofibromatosis?

[Boppie]

Yes, Neurofibromatosis is the long word for NF.  There is NF2 and NF1.  I believe NF2 is the one that occurs in multiple sites.

[tony]

Sorry, originally 100 yrs back (?) all such conditions (currently NF2 and Neurofibramotosis)
were actually grouped under the Neurofibramotosis term
Then, a while back medical opinion decided to divide definition of the condition
(because the conditions were not really the same at all)
into two NF1 and NF2 - the NF1, or NF  is really the old Neurofibramosis
NF2 is quite rare (1 in 40,000 ?) there are a few of us on the list
and now also its own section as well
We have similar issues to ANers - but sometimes rather harder (?)
Currently NF2  divides into two types - though there is a growing
realisation that there might be 3-4-5 variations
We are at the edge of medical understanding here
- information seems to udate almost monthly
I wont go into the genetics - you need to spend at least
ONE  lifetime studying it to get an informed opinion.....
Best Regards
Tony

[nancyann]

WOW   OL,  you've been through it.
Sounds like you were a pioneer with the surgery.

Glad to hear the facial paralysis is improved, it's what I'm hoping for.
Things sure HAVE changed in 15 years  (we can all be thankful for that).

Take care you,      Nancy

ps.   We're  not old,  only better !!!!!!!

[Jill Marie]

I'm just coming back to the boards after a long absence, and I'm unfamiliar with some of the terms I see. My AN was removed 15 years ago via craniotomy; gamma knife and such treatments did not exist then or were not in common use. Watch and wait was not an option for me, as they didn't even know it was an AN pre-surgery, just that I had a brain tumor and it was coming out as soon as they could schedule an operating room. Anyway, what does NF2 mean? It seems that my "treatment" post-surgery (which amounted to "Bye, have a nice life") has also been very different from what most people experience these days.

Btw, I am 100% deaf in my right ear and had facial paralysis on my right side following the surgery. I have had four surgeries on my right eyelid, the last three to repair the damage caused by the first one, just days after my brain surgery, in which my eye was stitched partially shut. (It looks reasonably normal now.) The paralysis has improved over the years, but no one told me it would or to have therapy for it, which would probably have helped.

Anyway, sorry to be going on and on, I don't much get the chance. Thanks.

  I think I have finally found someone that fully understands what I went through 15 years ago.  Although I don't really belong to the AN family I do believe I qualify as a stepchild.  I've been looking for someone to share information with for quite some time but since I didn't have an AN I didn't read very much of this sight the first time I saw it.  I've wanted to exchange info. with someone so I tried the sight again today and found people dealing with similiar problems.  When I read that you had your surgery the same year I did and experienced the paralysis and the, "Bye, have a nice life" scenario I just had to write and let you know that I have been through it too!  I was told I had an AN but when I got to the Seattle, WA Ear Clinic they found that I had a Facial Nerve Tumor.  Now I was not only loosing the hearing in my left ear I was loosing control of the left side of my face.  They said I wouldn't be able to blink or close my eye.  I woulnd't be able to drink from a straw, they neglected to tell me I wouldn't smile again. Actually they probably told me in technical terms but I ddint' grasp it all as I was still in shock.  They said I would need eye drops in my eye and that over time my eye would water again.  As it turned out my eye did blink and close about 90%.  After my surgery I tried to drink from a glass and it all ran down my chin so my husband suggested drinking from a straw, I told him they said I couldn't, he told me to try anyway.  It worked, that was the beginning of my challenging what the doctors said I coudn't do.  I had no use of the left side of my face for almost 6 months. Overtime time my face grew stonger with the help of the other nerves so that most people don't notice my paralysis unless I'm around them for a long time.  My eye still doesn't water despite the fact the doctor thought it would in a couple of years.  I still can't smile but I laugh a lot.  When I had the surgery our 2 boys were in the 4th and 6th grades, it was hard on them and on my husband as well, he had to work, take care of the boys and me too! To add problems to the situation just 2 weeks after they told me I needed surgery in Seattle, I live in Spokane, I broke my leg/ankle.  The break had nothing to do with the Tumor, I looked out the window on a May morning and saw that our dog had destroyed some plants, I ran out to see how bad it was and stepped on a landscape board I always walk down but since it was slick from the morning frost I slid down the board and ended up with a tri-lateral break.  I broke my ankle on both sides and shattered the lower leg in 7 places, resulting in surgery.  I spent the summer of 92 on the sofa with a cast and an eye that no longer watered.  Hopefully you haven't quit reading this as there is a bright side to the story.  I didn't drive for 3 years as my vision gave me problems, I did however ride my bike every where I wanted to go when I wanted to be independent.  Every year when the boys had to go back to school we would go on an outing the day before school started, instead of going in the car we went out on our bikes and had a wonderful time.  We went from restaurant to restaurant and redeemed my oldest sons coupons for good attendance from the prior school year.  We had a burger at one place, a taco at another, and ice cream for dessert.  In 95 my husbands union went on strike and we both went to the Unemployment office to look for work.  I had a college education and had worked in a few office's before but not with facial paralysis and an eye that needs ointment every 15 minutes. I found a job I thought I could do, I applied for it and only 5 days after my husband went on strike I had a job.  This week was my 12th anniversary at that job and next week will be my, make that our 30th Anniversary of marriage.  Although I didn't get all the info. I wanted when I had my surgery 15 years ago I must admit that it wasn't all there fault.  The diagnosis was changed the day before the surgery and we opted to go ahead with it.  My doctor (Charles Mangham) was wonderful.  My Insurance comany told me that I had to have the surgery done by a doctor in the system and as it turned out he had only been doing the AN surgery for 1 year.  I told Dr. Mangham that I had to cancel my surgery and he told me NOT to.  He later informed me that he, the hospital and all the doctors and assistants involved would except whatever my insurance would pay them and they would write off the rest of the costs.  He was true to his word, thankfully he did that as the tumor as I mentioned earlier was not an AN but a Facial Nerve Tumor and the other doctor wasn't qualified to do the surgery.  Sorry this post is so long but even after 15 years it feels good to share with those that really understand.  Thanks for listening, Jill Marie

[nancyann]

Jill Marie:  I think it's amazing how much the human spirit can & does endure.
              You just boosted my spirits !!!!!!
              Thank you for your story of strength & refusal to give up !!!
              Nancy

[ppearl214]

... My AN was removed 15 years ago via craniotomy; gamma knife and such treatments did not exist then or were not in common use....

Hi oldewoman (you are not, btw!) and welcome back.

In your comment above, I'm really rather suprised as GK was used as of the late '60's with a proven record on brain tumors back in the early '90's.  Either way, I'm glad you are doing ok and hanging in there.  It does sound like its been a tough road for you but glad to see you here. Your experience and journey has been rather rough but glad to see you are doing ok.

welcome back.
Phyl

[Jim Scott]

oldewoman:

Welcome back!

If, at 54, you're 'old', then I'm Methuselah....(see my signature).  I don't think so. 

Your account of your AN surgery and related and mostly unpleasant experiences from 15 years ago (1992) are informative and help us folks who have or are undergoing AN surgery or radiation treatment today realize how fortunate we are to be diagnosed with this thing at this point in time, when medical knowledge  and treatment options are clearly superior to that of the early 1990's in regard to acoustic neuroma tumors. 

I regret that you had to endure so many surgery-related problems, discomfort and probable anxiety due to the lack of knowledge on the part of medical professionals that probably were at the root of some of your post-op hassles.  Unfortunately, one-sided deafness and/or facial paralysis are not uncommon after-effects from AN surgery, even today, although therapy is available to treat facial paralysis.  The good news is that such complications are becoming less prevalent as the medical community learns more about AN surgery, becomes more patient-focused and strives to avoid the kind of complications you suffered.

Please accept our empathy for the issues you've had to deal with, simply because you developed an acoustic neuroma tumor when the medical community, especially neurosurgeons, had far less understanding of the best way to get a successful surgical outcome that spared the surgery patient long-term physical and emotional difficulties.

Jim

[linnilue]

I too empathize with you.  However, I am two years post linac radiation and have had innumerable problems due to the radiation.  So, as much as you might think that things are different now that's just not necessarily so.  I feel sorry that you have had to endure all these problems.  It's horrible when the odds just keep stacking and the end seems insurmountable but believe me for you to sit down at a computer and express all of this to us, you are doing better than you think.  Congratulations to you for having the strength to endure and to share this with us.  And yes there are alternatives now but I (who am a nurse) know from my own experience that there is so much more to learn.  And to everyone out there reading this I say RESEARCH, RESAEARCH, and RESEARCH until you find the best treatment and physican/team for you.  A team approach is tantamount to getting the best of the best and most complete and comprehensive treatment program.  I trusted when I shouln't have and now I regret my decision but as they say "hindsight.."  I just wnat you to know that I understand you and you are not alone.