Author Topic: New to Forum  (Read 3675 times)

duffer

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New to Forum
« on: July 22, 2014, 10:07:07 pm »
My problem started in jan.2014 with 50% hearing loss to my left ear and white noise . I was just told by my ENT that i have Acoustic neuroma that is 1.4 x 0.9 x 0.7 cm in my auditory canal. When i first was told i was wanting to just cut my head open and get it out. My doctor (Eric Sargent ) at the Michigan ear institute said he wants to "wait and watch." My thoughts were ,Wait for what?, for it to get bigger and cause more problems? So now i am getting a second opinion from a doctor at beaumont hospital (Dr.Fernando Diaz). There are so many options, i am now leaning toward Gamma knife. All i know is i don't want to wait. It has helped me a lot reading all of the stories on this site. I know i will probably loose all of my hearing in my left ear and that i don't really care about , i just want the high pitch noise to go away. Thank you all for your stories. I will keep you all updated with whatever happens.

CHD63

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Re: New to Forum
« Reply #1 on: July 23, 2014, 09:38:37 am »
Hi duffer and welcome to this forum .....

As you have already discovered, this forum has a wealth of information on the experiences of AN patients.

I wish I could say that the treatment of your AN (be it surgical removal or radiation treatment) will stop the tinnitus (high pitched noise you have), and it may, but it seems many of us found not much change in it.  Tinnitus is often the result of the brain trying to fill in the missing input, when we experience hearing loss.

Please remember that none of us on this forum are trained medical doctors so all we can do here is share our personal experiences.

In my case, I never had the ringing (tinnitus) prior to my first AN surgery and now have it constantly ..... but that is just my case.

Best wishes.  Let us know how things are going and what Dr. Diaz said.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

duffer

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Re: New to Forum
« Reply #2 on: July 24, 2014, 09:33:10 pm »
Clarice,

   Too bad once they are in there they can't cut the tinnitus cord too. Thanks for the reply. I'm looking forward to just getting this
done and behind me. Are we allowed to post pic of our MRI scans? I clicked on attachments and other options but nothing on
attachments came up.
Bob

jaylogs

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Re: New to Forum
« Reply #3 on: July 25, 2014, 11:40:13 am »
Hi Duffer!  In answer to your question about inserting pics into a message, the picture itself first has to exist on a webpage somewhere so you can insert it's address link into the body of your message.  Once that is there, then you click on the "Insert Image" button (below the "B" button) in the text editor window where you are typing your message.  It will automatically insert into your message, and put your cursor in between the two img groups and brackets.  Once there, you insert the http address of where the image is at.  You cannot insert an image that is stored on your computer.  Hope this helps!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

raji83

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Re: New to Forum
« Reply #4 on: August 15, 2014, 12:19:35 pm »
Hi!! i got diagnosed in june 2014 almost of same size as yours. I am going for Translab approach. I will be deaf in right ear but i will keep myself away from headache. You can meesage me and we can talk about it. I hv met 5 surgeons by now. So feel quite confident about the AN.

ANGuy

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Re: New to Forum
« Reply #5 on: August 15, 2014, 09:24:41 pm »
The reason for waiting is to see if the tumor grows.  ou could have had that tumor for 20 years and it hasn't grown a bit and maybe never will.  Treatment for AN's is not about improving symptoms, it's about necessity.  In many cases, the tumor must be arrested or removed or death will ultimately result.  In many cases the tumor will NOT cause death and treating it WILL NOT improve symptoms.  The surgery or radiation itself very often worsens symptoms.

I feel for people with 3cm AN's that simply have to have the rumor removed and have no choice.  I also don't understand those with small tumors who rush to have them removed because they are under the impression that somehow removing it will improve their balance and tinnitus issues.

Look at the complications experienced by many of our members.  They suffer from headaches, tinnitus, hearing loss, balance issues, and regrowth of tumors.  Some of them had no choice.  You can't watch and wait when a tumor is blacking the flow of your C/S fluid and they had to have surgery.  The complications of the surgery are a better choice than the death they were facing.  However, IF you have a small tumor, there is a very good chance that you will never feel as good post surgery as they day before the surgery.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.