Author Topic: New to site  (Read 2565 times)

dalern

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New to site
« on: June 03, 2010, 01:49:19 am »
Hi,
I am new to this site.  I have been following it for a while trying to get some of my questions answered.  I was diagnosed 11 years ago with an idiopathic sensorineural hearing loss on the right side.  After a while, you get somewhat used to not knowing someone is talking on the right side of your body and having people think you are being rude by not responding.  It becomes second nature to turn in circles just to try to figure out where a sound is coming from.  And noisy restaurants?  Why bother to try to understand a conversation?  After I heard about the BAHA, I just procrastinated.  I'm a nurse, and of course I did the research, but heard that it was not very effective if a lot of years had gone by.  I finally decided, at age 61, that I owe it to my grandchildren to get the most out of life and to be able to hear everything they say to me to the fullest possible ability.  I am a legal nurse consultant, and to keep saying "what?" during a deposition or business meeting is not very professional.  There is a well known doctor here in San Diego at UCSD, Dr. Jeffrey Harris.  Through his audiologists, I was able to try both the new Oticon and the  BP100 on soft bands for a week at a time to see how the worked and if they made a difference.  I don't expect miracles and know that my hearing will not magically return.  I know that I will not suddenly have directionality.  But I do know that if I am able to have SOME word discrimination on my affected side, and in time gain any amount of directionality, it will be an improvement.  I will have nothing to lose.  My surgery is scheduled for June 30th.  I will certainly take any thoughts, advice or suggestions from any of you experienced BAHA folks out there.  This is a new and somewhat scary venture for me, but I do feel I have everything to gain, and nothing to lose.  Any and all comments are welcome.
Thanks in advance,
Dale
Dale Barnes, RN, MSN, CLNC
Tarzana, CA
1998 Sudden Onset Idiopathic Sensorineural  hearing loss diagnosed at House Ear Institute, Los Angeles
BAHA June 30, 2010 Dr. Jeffrey Harris UCSD San Diego

Kaybo

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Re: New to site
« Reply #1 on: June 03, 2010, 06:42:17 am »
Dale~
Welcome!
I do not have a BAHA yet, but if insurance covers it, plan on seeking one out w/in the next 6-12 months - I am in the middle of a big move right now to Houston so I'll have move opportunities there for one; however, I want to get my family settled first.  I had my AN surgery over 14 years ago and have been SSD since.  Although I cope very well and everyone I know is very accustomed to seeking out my "good" side, from all the wonderful stuff I read on here, it can't hurt!  I don't expect miracles, just a small improvement.  I am anxious to see what you think!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: New to site
« Reply #2 on: June 03, 2010, 06:46:21 am »
Hi, Dale and welcome to the Forum  ;D

In my opinion, the BAHA is one of the best choices you can make.  After my AN surgery left me SSD I spent 9 months being miserable and depressed by my lack of hearing.  The day I tried the BAHA demo was a red-letter day for me and I've been enamored with it ever since.

I had my implant surgery on 3/4/08 and started wearing a Divino on 6/4/08.  The surgery was quick, painless, and I did it with local anesthesia!

I've been extremely happy with the results I've achieved.  I have gained a sense of directionality from the BAHA that I never thought possible and in addition, it's been a huge asset in both my personal life and my "business" life.

After trying both the Oticon Ponto Pro and the Cochlear BP100 in October, I upgraded to the BP100 in April and have found that it's even better than the Divino I was wearing.

I think you will be thrilled with your BAHA, as most people (including me) are.

Lori (lori67) and I like to send a little kit we've created called the Official BAHA Recovery Kit to those having the surgery.  It's full of things that recipients will find helpful post op and best of all, it's free.  If you'll PM me your address, one of us will send you the kit.

Best,

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

dalern

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Re: New to site
« Reply #3 on: June 03, 2010, 08:42:12 am »
It's so nice to have support and to be able to have interaction with those that really understand.  I too, have those close to me always changing which side of me they sit on, walk on, etc.  Jan, I demo'd (on a soft headband) both the ponto pro and the BP 100.  I found that the BP q00 was a better choice for me.  I could not tell the difference in the settings on the Ponto Pro and found that it was easier to change the settings on the  BP 100.  Also, I liked the fact that you could turn the BP 100 all the way off.  Also, Jan, your success is quite noticeable.  Do you think part of that is due to the fact that it was so soon after your SSD occurrence?  It has been 11, almost 12 years for me, and I am not sure that I can expect the results to be quite as dramatic as yours.  However, I will truly be happy with any amount of improvement.  Part of the issue with the demos was that even on the soft bands, the appliance hurt and dug into my head after about two hours.  I had to take it off.  I know the real thing will be different when attached.  Also, when I would plug my good ear, I had dramatic hearing clarity in my deaf ear.  However, when my good ear was not plugged, it was still questionable for me  with a lot of background noise (like a restaurant) how much I could really hear if someone was on my affected side.  It took me months to make the decision.  Once I knew the insurance approved it, I figured I had nothing to lose.  Thank you so much for all the input.  Jan, I will send you my address.  How wonderful!
Dale Barnes, RN, MSN, CLNC
Tarzana, CA
1998 Sudden Onset Idiopathic Sensorineural  hearing loss diagnosed at House Ear Institute, Los Angeles
BAHA June 30, 2010 Dr. Jeffrey Harris UCSD San Diego

Jim Scott

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Re: New to site
« Reply #4 on: June 03, 2010, 12:13:40 pm »
Hello, Dalern - and welcome ~

I'm not a BAHA user and can't offer you the kind of information you're seeking but I'm confident our many BAHA 'experts' will be eager to help you - as some already have. 

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.

dalern

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Re: New to site
« Reply #5 on: June 03, 2010, 11:31:49 pm »
Thank you, Jim.  I really feel like I have found a bunch of new friends.  This is so nice! :)
Dale Barnes, RN, MSN, CLNC
Tarzana, CA
1998 Sudden Onset Idiopathic Sensorineural  hearing loss diagnosed at House Ear Institute, Los Angeles
BAHA June 30, 2010 Dr. Jeffrey Harris UCSD San Diego

darrensgirl

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Re: New to site
« Reply #6 on: June 08, 2010, 11:03:22 am »
Hi Dale,

My son has SSD on his right side. His hearing loss was diagnosed at severe to profound hearing loss on that side BEFORE the BAHA device. After two surgeries and the BAHA device....my son is either right at normal hearing level or just below normal hearing level. In either case, he went from not hearing anything to hearing everything almost 100% better than before the BAHA. I wish you luck with yours, my son has had no complaints with his and he is only 10.


Melissa

dalern

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Re: New to site
« Reply #7 on: June 08, 2010, 11:11:35 am »
Thank you for sharing that, Melissa.  Did your son have an AN?  Did he have the surgery prior to the BAHA to remove the AN?  Was his hearing helped by the surgery prior to the BAHA?  I am so glad to hear about his success.  I have had no surgery and do not have an AN.  From what I have read on this site, though, there has really been a lot of success with the BAHA for SSD.  Thanks.
Dale
Dale Barnes, RN, MSN, CLNC
Tarzana, CA
1998 Sudden Onset Idiopathic Sensorineural  hearing loss diagnosed at House Ear Institute, Los Angeles
BAHA June 30, 2010 Dr. Jeffrey Harris UCSD San Diego

 


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