Author Topic: Question?  (Read 4942 times)

Nicole

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Question?
« on: January 24, 2008, 08:40:11 pm »
My Dad had a large AN removed back in 1978 when he was 37 years old that has left him deaf in his left ear along with facial paralysis, and other issues on the left side.  He had some other medical issues a few years ago, and they found another one on the other side which is really small and doesn't appear to be growing (at least not at a fast rate).  He also had a half-sister who had an AN that ended up being malignant and she died from it.  I now have ringing in my ears (for the last 2 years) that isn't too loud.  I really only notice it when I'm trying to go to sleep or when there is no noise around.  I saw an audiologist a couple of days ago and my hearing is "pretty good" in his words (right side just a little worse than left).  He learned of my family history and freaked out and insisted on an MRI with contrast.  I had that done today and am waiting the results.  I really don't feel like I have this though because I don't have any headaches like my Dad did, or anything else, just the constant ringing in the ears.  Is it possible to have an AN without obvious signs?  Thanks.  I am worried if this is NF2 since I have 3 children that I am subjecting this to if I do indeed have it.  Oh, and I am 32 years old.  Thanks, again!

Nicole

lori67

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Re: Question?
« Reply #1 on: January 24, 2008, 09:43:27 pm »
Hi Nicole.

Yes, it is very possible to have an AN without the typical signs.  I didn't have most of the typical ones myself and either did many others here on the forum.  That certainly doesn't mean you've got one and you should definitely get the MRI with contrast to be sure.  I don't know a whole lot about NF2 but I do know there are other signs which I'm sure you can find in the NF2 section of this forum.

I am pretty sure that AN's are always benign, so is it possible that your Dad's half-sister had a different type of tumor? 

I know I was worried too, because my Dad has an AN also - a small one - but my doctor said since we have no family history of it and neither of us has any of the other usual signs of NF2, it was just coincidence that two of us in the same family would have AN's.

I'd go ahead and get the MRI done.  With any luck it will turn out perfect.  Be sure to let us know how it turns out!
Good luck!
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

jerseygirl

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Re: Question?
« Reply #2 on: January 25, 2008, 12:04:47 pm »
Nicole,

It is possible to have a big AN with absolutely no symptoms. The younger you are, the more it holds true. I was diagnosed with a huge AN at the age of 25. Of course, it was an accidental finding as I had no headaches, tinnitis and perfect (not just pretty good) hearing and speech discrimination. It sure changed after surgery #1! I had to have another surgery on it done last year and can tell you  that, generally, smaller tumors carry less risk and  less damage  and more treatment options with them and that is not just because the technology has improved. 

What is important to know especially for NF2s or potential NF2s is that small tumors can be removed but hearing can be preserved. The surgeons just recently started to do it, and there is no guarantees but this option was not available in 1978 when your father had surgery or 1988 when I had my first surgery mostly because the tumors at their discovery time were so large since MRI with contrast was not available. So the surgeons did not have a lot of years and cases to practice.

As far as kids go, I really understand your concern because I am also a potential NF2. My children will be screened for tumors. There is now also prenatal and genetic testing available for NF2 which was not in 1995 when I had my second child. There is also a drug for NF2 in trials now. In fact, there are a lot of new developments in the field, so there is every reason to be optimistic.

I hope you don't have any ANs or other tumors! Hope all is well!

                            Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Nicole

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Re: Question?
« Reply #3 on: January 25, 2008, 03:19:25 pm »
Thanks for your replies, Eve and Lori.  Guess I'll just have to wait for the results (I hate waiting).  Probably won't hear about the results until early next week.  Will keep you all informed, staying optimistic that there is nothing there....

Joef

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Re: Question?
« Reply #4 on: January 26, 2008, 02:13:52 pm »
There is a test's for NF2 ... have any of your family members that had AN tested for NF2 ?
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Nicole

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Re: Question?
« Reply #5 on: January 26, 2008, 04:02:30 pm »
No they have not been tested.  Dad's sister passed away, and my Dad has not been tested

Nicole

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Re: Question?
« Reply #6 on: January 31, 2008, 12:32:56 pm »
Thanks for the replies again!  My MRI came back with no abnormalities!  Guess I will not find out what is causing the ringing in my ears, but I am glad not to have an AN.  Thanks again!

lori67

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Re: Question?
« Reply #7 on: January 31, 2008, 01:10:22 pm »
Great news, Nicole!  I'm so glad.

Good luck in finding out what's causing your ringing ears.  Maybe it's the 3 kids?   :D  Heaven knows mine can cause ringing ears, headaches and a whole variety of things!
Thanks for letting us know your results!
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

jerseygirl

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Re: Question?
« Reply #8 on: January 31, 2008, 08:03:14 pm »
This is wonderful, Nicole! This is the best MRI; that is what we all want.

           Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.