new to forum 5/3/2010

[wasky]

I've been spending lots of time reading info posted....didn't realize how much I'm in for.  I haven't been able to hear for years on my left side, thought it was just the end result of long term tinnitus, never showed any other symptoms.  Recently had a MRI done and found a 3.5cm AN.  When called with the results the doctor didn't really make a big deal of it.  Just said he would be in the room and a neurosurgeon would do the surgery as it was too large for other options.  Sounded like no big deal....not anymore. Thanks to all of you I've learned I need to and have been doing some research before my next visit.  I live in Western Massachusetts and have decided to check Mass Eye & Ear. The original appointments were scheduled at Baystate Medical Center.  I read what is ahead for me but basically blot it out in order to get through each day.  I read some info about leaving some of the nerve as a cochlear implant might be an option?  Any other info on that? I've been told I will be totally deaf on left side after surgery.  Once I decide on which facility and physician, I will learn more specifics about my case I'm sure.  I'd like to hear from others about various choices in Massachusetts.  I greatly appreciate and thank you for all your information.   

[Debbi]

Well, welcome to our little band of wobbly deafies.     Seriously, sorry you have to join us, but glad you found this forum.  I do not have personal experience with Mass Eye and Ear but know that you will hear from others here about them.  I have heard only great things about the surgeons there.

As you have probably learned from reading various posts, the experience of the medical team has a lot to do with the successful outcome of treatment.  Don't hesitate to consult with more than one doctor and don't settle until you are comfortable.  I consulted with 3 teams and it was the third team that I went with - no regrets.  You may also want to send a copy of your MRI to House Ear Inst in Los Angeles - they will do a free phone consult with you.  Although I did not opt to fly to Los Angeles for surgery, I have met many who did with total satisfaction.

Please ask any questions - you'll find we are a pretty open bunch of folks and always happy to share whatever we know.  And, don't hesitate to step away from the computer now and again - some of what you read is overwhelming.  I know that I had to take a few "info overload breaks" during the first few terrifying weeks.  You'll be okay.


Debbi

[CHD63]

wasky .....

Welcome to this forum of caring and very supportive friends, who individually or collectively understand just about any scenario you are encountering.

Debbi expressed the important aspects very well.  This is absolutely one time you want physicians/surgeons with the most successful experience with ANs you can find.

Best thoughts and ask away .....

Clarice

[Lizard]

Wasky,
Welcome and so sorry you have to have endure AN surgery.  Hopefully you did a search on Mass General and the Dr's there.  There are many people here who live in the area (me included, just over the CT border), so in my personal opinion the best group of wobbly deafies around (thanks Debbi).  Make sure you ask your Dr. lots of questions, and write down the answers, because you will forget, or bring someone to take notes for you.  The most important one is how many surgeries do they do each year.  Technologies change and you want to make sure you are in the best and most capable hands.  Also, try not to be to overwhelmed by all the information on the forum, everyone's journey is different and its hard to know how you will do.  Just have to have faith in your doctors, if you don't then get another opinion. 

Once you have your surgery date set and the Dr's chosen it does get easier, this is truly the toughest part.

Take care and looking forward to meeting postie Wasky ( I like that has a good ring) at one of our Worcester brunches...

Liz 

[leapyrtwins]

I read some info about leaving some of the nerve as a cochlear implant might be an option?  Any other info on that? I've been told I will be totally deaf on left side after surgery. 

Hi, Wasky and welcome to the Forum.

CI's (Cochlear Implants) are for those who are bilaterally deaf (deaf on both sides).  BAHAs are for those unilaterally deaf (SSD).  I am deaf left as a result of my AN surgery, and I have a BAHA.  It is totally amazing 

If you want more information go to www.cochlearamericas.com or search this Forum for "BAHA"; you'll find lots of posts.

Jan

[Larry]

Hi Wasky,

Agree - get other opinions and don't rule out radiiotherapy treatment. There is a choice of three different surgery techniques and two radiotherapy types.

You need to know the correct size and location of your AN - so get a second opinion.

When deciding treatment options, also consider the recovery process as they are very different depending on treatment options.

cheers


Laz

[Jim Scott]

Hi - and welcome, Wasky ~

No one wants an acoustic neuroma but since you've been diagnosed with one and are facing surgery, you've found a very good place to tap into for information and support. 

Our members are from all over the country and each brings a distinct point of view based on their experiences.  As you're learning, AN removal surgery is complex and definitely carries some risk.  Some AN surgery patients do just fine with minimal complications (Jim raises his hand) others have a few post-op problems that eventually resolve or are surmounted in other ways and a few have ongoing, near-intractable issues.  Frankly, there is no 'average' AN patient.  We're male and female, in our 20's, 30's, 40's 50's 60's and even older, from all walks of life with tumors that range from almost infinitesimal to huge (think 8 cm).  I was diagnosed at age 63 with a 4.5 cm AN and underwent surgery and radiation with excellent results.  I trust that you'll have a similar surgical outcome.   

Although I reside in nearby Connecticut (northwestern part of the state) I'm not familiar with the Massachusetts Eye & Ear Infirmary but I've noted some positive comments regarding this institution from other members of the forum.  I'm sure they'll be contributing to this thread, soon.  Meantime, absorb all the information you can but back off when it gets overwhelming, which it often can. 

I wish you a great surgical outcome and look forward to your updates as you seek a doctor that you feel confident about performing the surgery.  We're here to support you all the way. 

Jim