What caused your AN ?

[Battyp]

Interesting topic...

I had an mri done about 5 years ago and no an was reported...after getting a cell phone and using it for business 5 years later an...hmmm does make one suspicious.  No head injuries when i was a child, and no loud music.

[stacylee]

Joef,
The tinnitus is only bad when the hearing is off.  It can go from a hummmm to a full blown roar.  Also when there is not hearing at all there is no tinnitus just a feeling of fullness and pressure.  Everyday is an adventure.  I am a single mom and a pre- kindergarten teacher.  All of my kids know that they must be looking at me for me to hear them.
Stacy

[FlyersFan68]

Stecylee,
  How old were you when you discovered the first tumor and does NF2 run in the family? Were there any symptoms as a teenager like cataracts and are there any other tumors present??

  I think we should expand this topic to a two part question by adding the topic of late onsets of NF2 following treatment of the first. I know there are a handful of people on this very site that may be able to share their personal stories. I remember a few years back (while researching AN's) that most websites mentioned NF2 in summary while explaining symptoms and treatments for sporadic Acoustic Neuromas. I remember reading somewhere that most Acoustic Neuromas are a single one time event in 95% of patients presenting themselves with unilateral tumors and no family history of NF2. They usually appear rounded and encapsulated and bi-lateral tumors often present themselves together at once and in misformation. Occasionally we hear of someone developing another on the other side years after treatment of the first.

  My initial questions are:
 How accurate is that 5% NF2 & 95% sporadic ratio?? Also, would it be safe to say that out of that 5% that 2.5% had a family history and the other 2.5% were new first time genetic onsets?? Also, is it true that the later one may develop the "other" tumor and the older you are the more milder the case will be??

  What caused your AN?
  I used to believe that cell phones may be somewhat accountable but know I don't believe so despite not using a cell phone in two year. I don't think anymore that anything made for the masses like cell phones, aspartame and anything else is responsible. I guess it's all just gentics and destiny that some people get AN's while others do not just like some people get certain cancers while others do not. Everyone will encounter something in life sooner or larer after all we're not perfect and neither is the world we live in. I read once that possibly chemical exposure of some sort may be a contrbuting factor in causing AN's but not sold on that one either. I do believe more answers will arise hopefully over the next decade.

[kat]

  Hi everyone

What caused my AN ? I am a lfelong user of sweeteners and diet drinks and at age 57 that must count for something .
I have not had any headtrauma but in the sixties I was in London right in the thick of the swinging sixties clubbing and
and  constantly exposed to very loud music  This continued right though the seventies and it was not at all unusual for
me to fall asleep with headphones on listening to  Led Zeppelin full volume .  I have stopped  smoking 30 years ago and have not been a heavy cell phone user .


Best regards Kat

[Joef]

   I think (personally) that we all have set at birth a certain number of cell divisions, and can increase the number of needed of cell divisions by what we do. Take smoking for instance .. A non smoker can still get lung cancer .. but we can increase the number of cell divisions, because the body fixes hurt cells, we are increasing the number of cell divisions and making ourselves more susceptible to cancer (a growth where the cells have run out of correct divisions).   Same for AN's ..because of head trauma or loud music, or chemical use ... we have increased the number of divisions .... there is no single answer

[Kathyaquino]

I've never had a head trauma that I remember although I was found at the bottom of a swimming pool when I was 2.  Don't remember anything about it, but I don't think it had anything to do with the AN.  I've only been to one concert, and though I listen to music constantly I've never been into playing it real loud.

However, I worked at a college in 2 different offices that removed asbestos while we remained working in the offices.  Another woman in my office was diagnosed with an AN a year before me & several men at the college had cancerous brain tumors & some ended up dying from them.  It seemed like an awful lot of brain tumors for one small community college in California.  Although I never suffered from earaches when I was young, I had a massive ear infection or something about one year before I had the first MRI showing the AN.  I am also addicted to diet coke.  When I was first diagnosed with the AN I received many emails from co-workers with attached articles about how aspertane causes brain tumors.  I'm still getting phone calls & emails with the same articles.

There seem to be a lot of Kathleens (my real name) with AN's so I hope it has nothing to do with our name.  I just wish I'd never heard the words acoustic neuroma - especially since I'll be going in shortly to have the tumor removed again. 

Kathy

[stacylee]

Flyersfan,
  I was 27 with my first AN.  I was told it was larger than a golf ball and that surgery needed to be immediate.
I was diagnosed with the NF2 in August(10 years later).  It does not run in my family and the only two symptoms I had were papilledema(diagnosed as pseudo-tumor cerebri for 4 years) and the sporatic hearing loss.  My cerebral spinal fluid did not drain causing pressure around my brain and my optic nerve to swell. 
As I have found out lately I have 10 tumors 7 in my head and 3 in my spine.  Some are very small and my second acoustic is bi-lobed and still small.

I used to believe my first AN was artificial sweetener but in the last 10 years I haveonly eaten natural products, mostly organic.  I do not do any caffeine, I exercise(yoga), I never have anything with hydrogenated oils, artificial colors, flavors, or sweeteners.  So with that said I have many more tumors......

I wish I had a better answer.

[FlyersFan68]

It almost seems as though our immune systems need the everyday exposures and challenges to keep active and healthy. Maybe walking that straight careful line too long can possibly have a negative impact too since are bodies are designed to fight off most illnesses. I've tried to eat better and excercise too since surgery giving up soda, not using cell phones etc etc. but know I'm realizing that's probably all a wasted time.

 StacyLee, When I looked up that condition you mentioned I found something inspiring I would like to share with everyone. Check It Out!   http://www.geocities.com/Wellesley/Garden/1297/geese.html           

Take Care

[Larry]

Kathy,

I'm not a doctor and am a heavy diet coke drinker. Re aspertame, to the best of my knowledge, there is no "official" research / conclusion that it is harmful. Most of the sites on the net are from vested interests that will want your $. My mother is now 74, has been taking sacharin since it was on the market and for the last 30 odd years, pumping nutra-sweet down her at an alarming rate of 40-50 tablets a day (heavy coffee drinker). She has not got any tumours and apart from being over weight is perfectly healthy. I am not endorsing the product, I am just saying, be careful in views about products that we still don't fully understand. Tell your work colleagues to provide one piece of research endorsed by the FDA or has been published by the british journal of medicine.

It's like the horrible AN's we have all had/have. They truly suck and have changed my life significantly and hopefully one day, some research will reveal that AN's are caused by ..... Till that day.


Larry

[Sanddollar]

Larry -

I raise my Diet Coke fountain drink to you and toast to your good health and to that of your mother.  Who knows what caused our AN's?  The jury is still out as far as I'm concerned.  One thing this whole experience has taught me is that I was worrying WAY too much about things that really didn't matter.  I am going to put my consumption of Diet Coke, salt and artificial sweetners in that category and enjoy them - assuming they still taste good after surgery!   

I've been wondering how I am going to get my fix and how soon after surgery....   

Sanddollar

[Joef]

Bought 4 cases of diet coke  soda today (it was on sale)..... they are switching to "Splenda"  ;D 

[Mark]

Joef,

in case you had any worries about your 4 cases of diet coke, from the same Men's health article as I quoted for the Aspartame

Sucralose ( splenda)

What it is:

sugar molecules blended with chlorine (chlorine?? Yuck  ) . Found in Arizona brand diet iced teas ( and apparently now DC)

Calories:

0


Flavor profile:

Slightly chemical, 600 times sweeter than sugar (pucker up on that one, aspartame is only 180 times sweeter  )

Possible side effects:

None

Drink in good health   

mark

[Kathleen_Mc]

Kathy: Funny you should mention exposure to asbestos, I worked in an office with the stuff, every time I certain fan would cycle off we could see particles floating down from it.... just a few weeks ago a friend of mine with whom I worked in that office told me she has been "monitored" ofor a brain tumor her doctor has yet to name, sounds like A.N. to me by her symptoms and the slow growth rate?
I agree we shouldn't get bent outta shape to find the answer as to what caused us to get A.N. but it is
interesting. I learned within about a year post diagnoses that "why" can never be answered and I was burning a lot of energy on it so I stopped seriously looking for that answer.
Kathleen

[Windsong]

this asbestos angle is interesting....

I too worked in a building with it.. known to be in it and presumably sealed off with ceiling tiles....the
thing is I'd often come in and find a few had fallen down overnight and be scattered on the floor around my desk....

Shall i toss a coin between having been a diet coke addict for about seven years and working in a place with asbestos? (for even longer).....  I don't think I can blame the cell as I really didn't use it that much.....

I figure I will never know what caused my An....
Windsong

[Rc Moser]

IMO something starts it. I think Noise has something to do with it beings it grows off the inner ear. Trama or something changes the nature of the nerve to start the growth. Maybe it's what we eat, how much trama is induced, or or own body cell structure. I think if all thinks are in the right place at the wrong time "stuff happens". No one else in my family has this, so something started it.  I suspect Noise due to being around Jet engines for 30 plus year. I can only remember once being severe tramatized by Noise and guess what showed up 13 years later? My vote is Prolonged and severe high pitched Noise Hz's. that's the only connection I can make. But, the experts say no, but they can't give you an answer either.