ANA Discussion Forum
General Category => AN Issues => Topic started by: mindyandy on July 29, 2008, 03:21:31 pm
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There seems to be more and more newbies....which is GREAT they came here for support but very unfortunate that they have an AN.... I have notice 10 newbies witihin 1 week....
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I noticed that as well. I'm losing track. Seems like an AN epidemic has hit North America.
To all of you who are new, welcome to a group of some of the finest, most caring people you will ever meet. They were my lifesaver when I signed on 2 months post surgery.
If you have an upcoming surgery, please note it on th AN calendar (the link in on my signature line -- below). And you will find a lot of good answers from this group for the questions you may feel are odd or silly. Ask away. It was the only way I discovered that a wonky-head is a real thing.
Wishing you all the best.
David
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I telll ya, it's all those cell phones.. ;)
Brian
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I assume that it means more people are finding this forum, not that there are more ANs showing up. Hopefully.
Or maybe Brian is right, it is all those cell phones, or maybe a lot of these people worked in fish hatcheries, you just never know. :)
David, weren't you the one who wanted to start a campaign to get all the ENTs to inform patients about this forum? Maybe it is already working...
Steve
PS: Welcome to all newbies. The more the merrier.
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Welcome to all newbies. The more the merrier.
Absolutely! Welcome, newbies! Glad you've joined us ;D
Jan
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Or maybe Brian is right, it is all those cell phones, or maybe a lot of these people worked in fish hatcheries, you just never know. :)
Steve
PS: Welcome to all newbies. The more the merrier.
Wait! How'd you know about that? ;) Btw, welcome newbies!
Brian
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Brian -
did you miss the fish hatchery theory ???
I couldn't tell if you were just feeding into Steve's humor or not, so in case you missed it, let me say it's an actual theory :o
It's worth a search to find the link. Very interesting theory to say the least ::)
Jan
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Oh, I got the humor alright. I don't know about that particular theory, but I'm confident that one exists. I'm equally humored that these types of theories exist.
Brian
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I think more people are used to using the internet for research, and when you are diagnosed with a brain tumor it's only normal to want to find more info. Also, my neurotologist did tell me to do as much research as I wanted on the internet, he really encouraged it. When I told my neurosurgeon what a wonderful help this forum was he made a comment like, "Well, I did check out the forum and it seemed like the people that made the most comments were people that had problems with their treatments. The people who seek treatment and do well don't seem to post as much so a new person seeking info might get more negative comments then positive ones." I told him that he was completely wrong. I found the support to be very positive and helpful. He did say that it had been awhile since he had been to the message forums. Anyways, I am very glad that more newbies are finding ANA and the support that it is here.
Julie
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I know that my use of the internet went from about 1hour/month to about 30hours/month since I found out about my AN.
Dan in Germany
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I lost count..... and yes, definately more active with new posters/members lately... and for all those that have come here seeking info, experiences and support, a "welcome" to you all.
Phyl
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Welcome 'newbies'! :)
If these forums are getting better-known (and utilized) that simply validates their existence. While we all wish AN's could be eradicated, as long as they exist, whatever we can do to help, support and advise AN patients is a very worthwhile use of the internet and why I'm proud to be a part of this group.
Jim
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I second that Jim!!!! WELCOME NEWBIES!!!!!!!!
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a BIG Thank You to all of you, seniors ;)
I would like to share that this site has been very informative and soothing place for me. Although I found you 2 months post-op, I still need to have another surgery done so this is a pool of information!
Thank you for being here and sharing!
Best weishes,
Hrissy
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welcome newbies.....wow just from 1 week ago I noticed about 8 more :o
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Folks I have to say that without your support and information I would not be making this journey in quite the same way. I am so grateful that you are here. By the way, what is the fish hatchery theory????
Marci
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By the way, what is the fish hatchery theory????
It's not a theory, it is cold hard fact, courtesy of the National Institute for Occupational Safety and Health. ;D
Well, not exactly cold hard fact, they did mention "the small number of cases" and say that "further study is warranted." Here is the report:
http://findarticles.com/p/articles/mi_m0BUM/is_1_79/ai_59519791
I found this quite by accident - I was not looking for a fish hatchery connection - and now I like to mention it whenever the cell phone theory gets brought up.
Steve
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Interesting little article. Bad news for the fish hatchery folks. Wonder if the fish are eating cell phones..... :o
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Hi Newbies -
I've been out of touch for pretty much the past week, but I wanted to welcome all the newbies for our forum. Although all of us are always sorry to see more people find out they have ANs, this is a wonderful place to come for information, support and sometimes just to cut loose and vent or be a little zany. I hope you will all find our group to be a great source of comfort and help.
Best wishes,
Wendy
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The information and experiences that are shared here have been so helpful, I have read just about all the entries. You guys are so nice to us Newbies.
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Hey Rivergirl
Some day you'll be an oldbie helping out newbies. It's that karma thing.
Best wishes to you in that holding pattern.
David
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Hi,
I did read that they did research and are saying that cell phones after 10 years is causing AN's. I just find that hard to believe. Did they see the incidence of AN's higher? It just seems to me that if these existed before cell phones how does a cell phone cause them? I don't know why but it doens't make sense to me.
http://www.thestar.com/comment/article/470148
Two studies have shown an apparent association between cellphone use and acoustic neuroma – a benign tumour, not a "cancer." But be careful. These studies were "case-control" – a design methodology popular with researchers because it is relatively easy and inexpensive but notorious for producing spurious results by chance or unrecognized confounders. Case-control studies are useful for generating hypotheses that can then be tested by more reliable methods. Case-control studies should never be taken at face value and should only be applied to public policy with great caution. Any epidemiologist knows this.
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Robyn:
Your logic is impeccable and of course, I agree. I don't know why people are so eager to blame cell phone usage for Acoustic Neuromas but I suppose these scientists have to have something to 'investigate' in order to keep the federal grant money flowing.
Acoustic Neuromas were discovered over 100 years ago (in cadavers used in medical schools) and were first operated on (unsuccessfully) shortly after the turn of the 20th century. This unassailable fact would seem to negate the hypotheses that environmental factors, mainly those that travel through the ear, are the source of the abnormality that we call 'Acoustic Neuromas'.
But no, I see this cell phone-AN 'link' all over the place, especially on the internet where facts are elusive and conjecture based on false assumptions is rampant in many areas. I'll bet that 100 years ago, the (then-new) telephone was being blamed for deafness.
I'm afraid that the 'cell phone causes ANs' theory will slouch on until the actual cause of Acoustic Neuromas is finally discovered....which, at my age, probably won't be in my lifetime. FWIW, I suspect genetics are the culprit, but of course, that is pure speculation. I'm certainly not a scientist or physician and, as always, I could be wrong.
Thanks for your sensible post. I trust your son is doing well. :)
Jim
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Jim
I agree with the genetics theory. That was the reason I took a wild shot at the ethnic idea. Trying to find some commonality in a collective group that researchers don't have access to -- or haven't approached. They are sitting on a statistical goldmine here but it seems as though they are focused on environmental causes. I could obviously be wrong too, but I think if it were proven to be genetic, the research could be more focused on isolating the gene rather than investigating fish hatcheries and cell-phones. Actually, I don't really know what research has been done. Do you know if anyone has taken the genetics approach?
David
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David:
To the best of my knowledge, only NF2 has been researched based on genetics. Because ANs are both benign and relatively rare, I doubt there is a lot of interest in researching their cause. However, there seems to be a lot of scientists claiming or at least 'warning' about cell phone use being a factor in Acoustic Neuroma development. I think it's just hype without any real scientific merit. The genetic factor seems a lot more logical but doesn't seem to get much attention. Too bad.
Jim
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Hey all,
While I was at UH I was asked to enroll in a study of genetics on primary brain tumors (benign and malignant) so I know there is at least one study going on. If you want the name of the person I "gave" my tumor to, let me know. I think I sort of maybe know exactly where it might be. Maybe.
Marci
(at home resting and clearly not cleaning the house in any way.)
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When I was diagnosed with AN I had only just got a cell phone, or brick as it was called then so I do not think it was that :) Although I must admit that I was exposed to high levels of RF (at the upper end of the RF spectrum) for 6 years before diagnosis.
But of course, that could just be a coincidence. Yes, I am a newbie on this forum - I did not have the will power to join until now. It is nearly 20 years from when my AN was removed.
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Maverell:
Welcome to the site & forums. I don't quite understand why will power was necessary to post a comment (perhaps you meant 'courage') but whatever it was I'm glad you found it. I'm equally pleased that your statement is pretty much in accord with my stand on this issue. I know that I've made my position on the alleged cell phone-Acoustic Neuroma connection quite clear (almost ad infinitum) so I won't repeat it.
Please feel free to post again and don't be concerned about courage or will power. We're all friends with a common bond here. :)
Jim
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More and more...I was hoping to not see more....Not that I dont welcome newbies just I was hoping that there would be no more AN's....
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Hi all - I was pretty sure I was going to be a newbie, and I can't tell you how wonderful it was to lurk and read so many positive, well-informed and entertaining posts on this site while I was waiting for my MRI results. FINALLY I got the practice manager at my ENT's office to tell me, even though the doc was on vaca, that my MRI report was "normal study." Good news indeed, yet I'm no wiser about the cause of my relatively sudden, one-sided high-frequency hearing loss and tinnitus that I noticed about six weeks ago. Co-incidentally, there is a review article on sudden sensineural hearing loss in the latest issue of the New England Journal of Medicine.
So now I may have to sign up with one of the hearing loss/tinnitus boards, but I can't imagine they will be as sterling a group as this one. My very best wishes to you all!
Richard Saltus
Newton, MA
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Richard -
I'm glad to hear you don't have an AN, but I wonder about the mysterious hearing loss. The tinnitus is quite common so it doesn't puzzle me as much.
I hope you find the answers to your problems.
Best wishes,
Jan
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Richard:
I join my forum friend Jan in being pleased to learn that your MRI didn't show an Acoustic Neuroma. I also hope the cause of your tinnitus and other hearing issues is soon found and easily remedied. Oh, and thanks for the kind words. :)
Jim
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Richard,
Did they use contrast when you had your MRI? If they did congratulations on not having AN. I'm also glad you found the forum and appreciate us!
Anne Marie
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Hey Richard
Welcome to the Forum. I may be able to shed some light on your hearing issues. For over 23 years, I have had high-pitch hearing loss and tinnitus -- I'm guessing before the tumor developed. While I can't say for sure what eventually triggered the loss my suspicion is that it was caused while flying in an un-pressurized plane while I had a serious head cold. However, I was hearing loss waiting to happen. In my younger days, I played in a band and was exposed to some very intense high end sounds. I am sure that set me up for whatever happened down the road. Guessing from your name Music Guy, you may also be exposed to abnormal sounds. There could have been a single incident that you may not have even been aware of that triggered your loss. My biggest advice to anyone who has had a hearing loss is do everything you can to protect your hearing in the other ear. I didn't. I hear very little now without the use of a hearing aid.
BTW, thank you for the "sterling" compliment.
David
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Hi Richard,
I say stick around the forum anyway. I'd be curious to find out what caused your hearing loss and/or tinnitus, and if anything can be done about it. It is also useful to have someone with symptoms similar to an AN who can chime in to point out other possible explanations when new cases come up.
Plus anyone who considers us a sterling group is always welcome. :D
Steve
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Richard~
I think you should stay around...I KNOW you won't find another group like this one...for many reasons!! ;D
K
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Richard -
I'm with the others. I think you should stick around also ;D
Jan
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WetEver,
I know exactly how you feel. Once I was diagnosed and was weighing all my options I was driving myself crazy. Then when I finally made up my mind and booked a date for my surgery I felt like a weight was lifted off me.
Good luck with your treatment and keep us all posted.
Neal
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well welcome newbies!!!!!!! ;D
the good news is we all been there done that. and from what i have seen in here, there are a lot more positives then negatives posted as well.
some of that is due to the "oldsters" jan, jim, our fearless leaderette.
these hero members, global members senior cape flying members......... ;D
and then some like me who try and chime in in batches every once in awhile.......
got a concern newbies? let us know ...............
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I am one the many newbies you are speaking of and I 'm glad to be part of a crowd.
FYI, my Neurotologist, Dr. Wilcox, at Jefferson Center for Balance and Hearing in Philadelphia, PA directed me to "ANA". It only took me two years to actually use it! But he actually gave out an information sheet that suggested this website.
Just thought I'd pass that on, and thanks to all for the warm welcomes.
Suz
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I'm a newbie and I sure have found the forum to be very supportive and encouraging for all going through this journey. Even though I didn't have the AN I found this site to be very supportive and encouraging for the "care givers". This is a hard journey not matter what your role is and I found this forum to be great. You can get definitely get more detailed information on this forum than from the doctors. Not that doctors don't have good info it is just that they don't know what it is like to go through this.
Chris