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Author Topic: JUST BEEN TOLD I HAVE A/N  (Read 6580 times)

Paulette

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JUST BEEN TOLD I HAVE A/N
« on: May 02, 2005, 07:10:10 pm »
If I elect to have an operation. will my face be disfigured Or what other post operation can I expect? thabks
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Bob Partak

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Re: JUST BEEN TOLD I HAVE A/N
« Reply #1 on: May 02, 2005, 09:45:05 pm »
Paulette,
Most likely you will not have permenant syptoms as surgery techniques have advanced greatly in the past 5 -10 years. Radiation therapy is also a good option, however you need to talk to your doctor regarding the size and location of your tumor before deciding on what to do. AN's are not cancer and grow very slowly so don't panic and read all you can. The ANA is a great place to start.Also this website. Some patients do have post-operative problems, mostly temporary, and almost all come through this without major difficulties.
The Acoustic Neuroma Ass. has great information they can send you. Just call at 770-205-8211.
I wish you well, and don't panic.  Bob
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odirish

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Re: JUST BEEN TOLD I HAVE A/N
« Reply #2 on: May 03, 2005, 05:46:06 am »
I have paralysis on the right side of my face and hearing loss. I've also had a cheek implant by a plastic surgeon so that it is not so noticeable. I still don't have a smile. I wish I had known about different approaches to remove the tumor. Make sure you research everything, and ask questions.

Mary Ann
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Kate B

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Re: JUST BEEN TOLD I HAVE A/N
« Reply #3 on: May 03, 2005, 06:13:14 am »
Hi Paulette,

First and foremost you are doing the right thing by seeking information. We are patients on this site willing to offer our best *expert* opinions. Please  present some more information about your situation--tumor size, hearing level, age.  Much has been written about side effects relative to tumor size. That being said, the darn tumors are individual and can present varying degrees of trickiness.

The most important thing you can do is find an experienced doctor for any treatment you seek: radiation or surgery.  YOu want one with at least a minimum of 100 AN treatments under his/her belt.
There are several postings under "Microsurgical Options* that you should read if you consider surgery.

There are also posts under the other treatment types as well.  Have fun navigating this site and other links that you find relative to institutions etc.

Perhaps the best known one in the US is House Ear Institute at www.hei.org.

Best of luck on your journey,
Kate
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Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Pembo

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Re: JUST BEEN TOLD I HAVE A/N
« Reply #4 on: May 04, 2005, 10:19:25 am »
Hi Paulette. Sent you a personal message.

First take a deep breath and know that you have come to the right place to find information.

Second to answer your question, everyone's experience is different. You may have temporary facial paralysis, you may not. You may have single sided deafness, you may not. 

Please keep talking to us and we can help.
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Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

rebecca

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Re: JUST BEEN TOLD I HAVE A/N
« Reply #5 on: May 04, 2005, 12:35:23 pm »
Greetings Paulette,

I found a great web site with tons of information on acoustic neuromas--emedicine.com.  It will give you much information on diagnosis and treatment options.  I actually printed and downloaded about 40 odd pages and gave it to my GP who then contacted my surgeons to get me a quicker surgery date.  One thing I can say is that with the health industry the way it is, you really need to be your own advocate in making sure 1.  You have a team of doctors who are skilled in this procedure; 2.  The doctors have the equipment (monitors, etc.) necessary to this surgery; and 3.  Lots of patience.

Best of luck to you.
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Texas Gal

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Re: JUST BEEN TOLD I HAVE A/N
« Reply #6 on: May 05, 2005, 07:55:37 am »
Sweetie, it will be a battle, but one which you will WIN!!  I have a large acoutic neruroma agaiinst my brain stem.  Please....Please...look into the x-knife procedure.  By the grace og God, my husband found the BEST doctor to treat these.  His name is Dr.Thomas Graham phone#903-595-2441.  He is wonderful!!!!!!!  You are in my prayers sweetie, e-mail me if you need to talk ..teacher2b@prodigy.net.   Hang in there....Karla
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ljedwards

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Re: JUST BEEN TOLD I HAVE A/N
« Reply #7 on: May 06, 2005, 11:16:30 pm »
Paulette,

You have been given good advice by the posters.  ANs generally grow slowly so you have time to research.  The key to treatment is to choose experienced doctors, even if that means going out of state. 

The precursor of this forum was a listserv.  A few former members liked the format so much they have established another listserv.  It is just another patient resource much like this forum without the various topics.  Check it out at www.coollist.com/group.cgi?  As another resource, look up the reference Kate Besserman gave; again, another patient produced resource.

Good luck with your research.

Jeanne
GK 1998
Missouri

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ljedwards
GK 1998  left side 2.4 x 3.5cm
Midwest GK Center
Kansas City, MO

Karla

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Re: JUST BEEN TOLD I HAVE A/N
« Reply #8 on: May 13, 2005, 08:09:53 am »
Paulette, the key to treatment, is asking questions about your AN, and your own personal concerns.  It is your tumor and your future.  But, you need to have complete trust in your doctor/doctors.  Research all options. These tumors are slow growing.  Mine has been growing for 15 to 20 years.  I wish you the best sweetie!!!  Karla
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annewttom

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Re: JUST BEEN TOLD I HAVE A/N
« Reply #9 on: May 14, 2005, 11:32:06 am »
Paulette,

I agree with the other poster, Kate Besserman. The size and location of your tumor and your present symptoms have a great deal to do with the success of your recovery.  I had surgery two and a half years ago, and I am the same now as I was before I even knew I had a tumor. I have very minor hearing loss (that's what made me get a diagnosis), no facial problems whatsoever, and the balance issue is less than even a minor annoyance.

I urge you to do whatever it takes to get a consultation with House Ear Clinic.  House will give you the best possible info regarding the surgery option.

Good luck.

Newton
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Karla

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Re: JUST BEEN TOLD I HAVE A/N
« Reply #10 on: May 14, 2005, 02:14:10 pm »
Paulette, It is true what Kate and Newton stated about the size and location of your tumor.  It is a major factor for what is best for your type of treatment and recovery  The treatment I received is was what I needed for my AN,  an decided to do. Take Care, Karla
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cookiesecond

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Re: JUST BEEN TOLD I HAVE A/N
« Reply #11 on: May 18, 2005, 09:11:44 pm »
I have just been diagnosed with AN. I live in Conway South Carolina but have seen a doctor in Raliegh NC. His name is Calvin Cunnngham _ neuro-otologist.Is anyone familiar with him? I am considering surgery.All of this is new to me and a little overwhelming.
Lynn
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Mo

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Re: JUST BEEN TOLD I HAVE A/N
« Reply #12 on: May 30, 2005, 09:22:19 pm »
Depending on your location, look into the House Ear Institute in LA.  I had my surgery their and I have NO facial problems- but I realize that each case is different.  Contact the HOUSE to see if they can get you in...HEI is world famous for successful AN extractions.  You'll be in my prayers.  Take a deep breath and know that knowledge is power.  The more you know the less fear you will have.  Hang in there !
Mo
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