Author Topic: Confused  (Read 4101 times)

Lotty mac

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Confused
« on: July 06, 2012, 05:40:24 am »
I had surgery to remove my neuroma on the 22nd March this year ... I had the attitude that my SSD wouldn't worry me but Boy was I wrong :( I was such a social person but I now find myself staying home I'm finding it far more difficult then I anticipated ...
I live in Australia but don't even know where or how to begin searching options for rectifying this. My surgeon was great but at the time I kinda indicated I would be ok with the loss... And I'm guessing unless I want an implant he is not my go to?
Any advice / feedback would be appreciated ... I just watched a documentary for a lady who had a bone anchored aid and cried her when she turned it on ... Just not sure I am so keen for another op???
This board was a great means of support for me at the time of my op and I'm hoping this time it will be a great source of information :)

pjb

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Re: Confused
« Reply #1 on: July 06, 2012, 07:28:50 am »
Yes it is true you do not think it would bother you until it actually happens to you, but from what I have read I would suggest for you looking into the device the surgery is nothing compared to brain surgery so do not be afraid. There are so many people are pleased that they did it at least you have an option to be able to hear a bit again, it may not be like your actual hearing but it is suppose to help ..

Good luck I hope you reconsider your options and that you do have some.

Best Wishes,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Jim Scott

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Re: Confused
« Reply #2 on: July 06, 2012, 12:17:19 pm »
Hi, Lottie mac ~

Cochlear (manufacturer of BAHA devices) has a website that will give you a list of the many cities and towns in Australia where they have offices and/or clinics.  http://www.cochlearamericas.com/

At the website, click on 'Find a Clinic' and then on the portion of the map that outlines Australia, then find the office/clinic nearest your location.  Clink on that town or city name and the address and telephone number for the office/clinic will appear.  Calling a Cochlear office near you should help get you started on the path to a BAHA.  Good luck!

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

mk

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Re: Confused
« Reply #3 on: July 06, 2012, 02:15:26 pm »
Another option if you are not keen on having an implant is the new wireless Phonak Cros hearing aid. Several people here have tried it and had good results. I just got mine fitted for a 90 day trial period. Although I must admit that SSD didn't bother me so much (I lost my hearing gradually before surgery so I became adjusted to it), it helps for sure by providing a more "stereo" sense, and by allowing me to hear people who are sitting right next to my deaf ear.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

james e

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Re: Confused
« Reply #4 on: July 07, 2012, 05:13:50 am »
Very simple procedure. Painless. The wound is a high maintenance item for a few days, but it is easy to take care of. It is not like normal hearing, but I find it very helpful.

James

leapyrtwins

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Re: Confused
« Reply #5 on: July 13, 2012, 09:20:04 pm »
I was miserable being SSD after my surgery.

My solution was a BAHA and I echo what James said. 

I've had my BAHA for over 4 years now and am thrilled with it.

No need to be miserable being SSD.  There are solutions.

Definitely check out the Cochlear site.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Lotty mac

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Re: Confused
« Reply #6 on: July 17, 2012, 05:24:26 am »
Thank you all for your replys

Jan your comment " no need to be miserable" just really struck a cord and you are right I feel like I'm not living a full life ... Time for some investigations  :)

leapyrtwins

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Re: Confused
« Reply #7 on: July 18, 2012, 09:36:57 am »
Good luck with your "investigations", Lotty.

If you decide a BAHA isn't for you (some don't want the surgery or a rod in their skull - I'm not sure why  ;) ) - there are other options out there.

As Marianna mentioned the Phonak Cros is a good choice these days.  There is also the Sound Byte and the TransEar. 

To each his own.

Keep us posted,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways