Author Topic: know of a good website regarding SSD?  (Read 4108 times)

teffaz

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know of a good website regarding SSD?
« on: April 24, 2009, 01:59:28 pm »
Has anyone found a good website explaining the physical and psychological aspects of SSD? When I try to explain to others what it is like to be SSD, I find myself at a loss for words.

In trying to obtain information from the web, I've found that most SSD sites are product-sponsored, and are skimpy in explaining the reasons for the difficulties encountered in noisy environments by one who is SSD, for example.

Thanks for your help!

Brenda

P.S. This site is quite helpful, but are there others?
Source:  http://909ers.apl.washington.edu/~dushaw/SSD/01.html
1.5 cm. x .5 cm AN
translab May 2009
SSD (before surgery as well as after)
grateful for incredible surgeons: Dr. Porter & Dr. Syms
Barrow Neurological Institute; Phoenix

mikjul1

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Re: know of a good website regarding SSD?
« Reply #1 on: April 24, 2009, 02:37:19 pm »
I do not like how he says that a hearing aid can not  help some one with ssd. I am ssd an have been for all my life I agree the a cros aid can be difficult it was for me putting fake artifical sound in my good ear. But since I try the Baha as a demo it is a big benefit for someone with SSD like myself. Yes the one ear is still deaf but it brings sound to the deaf side of the head great benefit I think.  ;D
« Last Edit: April 24, 2009, 03:21:06 pm by mikjul1 »
:) BORN IN THE GOOD OLD USA :)
SSD on right side since 1974
BAHA surgery on 4/21/09 Dr. Carla Lawson
BP100 turn on date 8/13/09

mikjul1

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Re: know of a good website regarding SSD?
« Reply #2 on: April 24, 2009, 02:46:30 pm »
Brenda, I agree that some site sell there goods at you but I truely agree that noisey places are hard to be in. But I look at it this way anyway I can improve my hearing I won't to do an now that I found something I want to tell other people about it. All my life people meaning ENT audiologist say there is nothing they can do for an SSD person I excepted that until now. If you look at the audiologist they are finding out that people with SSD have a shadow effect in there hearing and they are finding out that it is sometimes unsafe for that ssd person I could have told them that along time ago an I am not a ENT or Audiologist by far but I have the experience of being SSD.
:) BORN IN THE GOOD OLD USA :)
SSD on right side since 1974
BAHA surgery on 4/21/09 Dr. Carla Lawson
BP100 turn on date 8/13/09

leapyrtwins

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Re: know of a good website regarding SSD?
« Reply #3 on: April 24, 2009, 03:05:22 pm »
Has anyone found a good website explaining the physical and psychological aspects of SSD?

Brenda -

thanks for the link. 

I don't know any websites dedicated solely to SSD, but there a lot of posts on this forum about SSD and people's feelings about it.

There is also some very good advice here.

Mike (mikjul) is an old hand at being SSD - 27 years, I think - so he alone is a great source of information.

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

mikjul1

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Re: know of a good website regarding SSD?
« Reply #4 on: April 24, 2009, 03:26:27 pm »
39yrs  Jan but who's counting lol. :o just makes me feel older.
:) BORN IN THE GOOD OLD USA :)
SSD on right side since 1974
BAHA surgery on 4/21/09 Dr. Carla Lawson
BP100 turn on date 8/13/09

leapyrtwins

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Re: know of a good website regarding SSD?
« Reply #5 on: April 25, 2009, 07:23:18 pm »
Well, I've got 8 1/2 years on you - if that makes you feel any better  ;)
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

mikjul1

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Re: know of a good website regarding SSD?
« Reply #6 on: April 25, 2009, 08:33:04 pm »
lol
:) BORN IN THE GOOD OLD USA :)
SSD on right side since 1974
BAHA surgery on 4/21/09 Dr. Carla Lawson
BP100 turn on date 8/13/09

teffaz

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Re: know of a good website regarding SSD?
« Reply #7 on: May 03, 2009, 08:36:33 pm »
~Jan and Mike,
Thanks for the tips!

You are right: this ANA discussion forum is THE best place to find information on SSD issues!

I've been reading past threads in the "Hearing Issues" category and found many that are very helpful. One that particularly addresses the issues I talked about in the first post in this thread is called:  "Discussion about Single-Sided Deaf, what is it like?" It is many pages hence. As of this post, the date of the last post to this specific thread is Sept. 2007.

Best,
Brenda
1.5 cm. x .5 cm AN
translab May 2009
SSD (before surgery as well as after)
grateful for incredible surgeons: Dr. Porter & Dr. Syms
Barrow Neurological Institute; Phoenix

NancyMc

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Re: know of a good website regarding SSD?
« Reply #8 on: May 04, 2009, 02:31:28 am »
Quote
sometimes unsafe for that ssd person

Agreed . . . I almost got hit by a truck once.  The driver had to honk at me to get out of his way.  How embarrassing was that?  Not to mention life-threatening.  When I plead with the insurance company for my BAHA, I'll be recounting that event!

NancyMc
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

leapyrtwins

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Re: know of a good website regarding SSD?
« Reply #9 on: May 04, 2009, 06:43:07 am »
When I plead with the insurance company for my BAHA, I'll be recounting that event!

NancyMc

Not a bad idea, just don't be surprised if they aren't sympathic - most insurance companies aren't.

Your best of line of defense in getting your insurance company to cover the BAHA implant and the processor is to educate them.  Most providers don't know what a BAHA is - or why people need it.  You need to stress that the BAHA is an implant or prosthesis - not a hearing aid (most insurance companies don't pay for hearing aids).  It also helps to have your doctor make a "case" for you - his/her input will help a lot.

Another important point is don't give up if they tell you no the first time.  Judy V @ the ANA told me that insurance companies tend to say no on the first request, but when pressed, generally approve it the second time around. 

Good luck with the battle,

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

NancyMc

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Re: know of a good website regarding SSD?
« Reply #10 on: May 04, 2009, 06:52:32 am »
Jan,
I'm sure I'll be consulting with you on the final draft of my appeal letter.  I appreciate your advice again on the proper battle plan.  I'm pretty determined once I believe I'm right and usually succeed in my appeals if for no other reason than "Just get this woman off the phone!"  How long should I wait before approaching my doctor about the BAHA?  He gave me the brochure, but McKenna's not really sold on it.  He did tell me that one of his associates implants them, so he is amenable.
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

leapyrtwins

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Re: know of a good website regarding SSD?
« Reply #11 on: May 04, 2009, 07:07:17 am »
I'm pretty determined once I believe I'm right and usually succeed in my appeals if for no other reason than "Just get this woman off the phone!" 

Sounds like we're twins separated at birth  ;)  :D

My neurotologist said I could have the BAHA implant surgery once my head "was healed" from my AN surgery - which in hindsight is a pretty subjective thing to say.

I had my AN surgery at the end of May, and tried the BAHA demo the middle of September.  At that time, my doc said my head was healed enough and that I could have the surgery any time.  He told me it normally takes insurance companies 4 to 6 weeks to approve the surgery and that his staff would handle the request.

His staff did a great job, but I had to keep hounding my insurance company.  First they "never received the request from the doctor's office", then they found the request but "had to have it sent out for further review", then they "needed more information from the doctor on why I needed it", etc., etc.,  Finally I got our insurance broker involved (policy is through my employer) and he told them to stop giving me the runaround.  As he told them, they pay for Cochlear implants so they have to treat BAHAs the same way.  BAHAs are to unilateral deafness (SSD) what Cochlears are to bilateral deafness.

Long story, short, my insurance company didn't approve the procedure until the end of February - a whopping six months after our request  :P  But I'm just thankful they finally did.  I had my surgery the first week in March.

I didn't have to convince my neurotologist that the BAHA was right for me - he's done a lot of the surgeries, and is definitely "sold" on them.

I'd find out from Dr. McKenna when he considers your head to be healed and then schedule an appointment with his associate and ask to try the demo.  If you like it, you can go from there.

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

JerseyGirl2

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Re: know of a good website regarding SSD?
« Reply #12 on: May 04, 2009, 09:07:43 am »









Nancy,

I agree with Jan's suggestions. I took a similar approach and was successful. My surgical consultant at House sent the first "request letter" to my insurance company, and, as we all had expected, it was denied. When I began composing my appeal letter, my first thought was to make it really long, include lots of supporting documentation, photocopies, etc., etc. I then decided to keep it fairly short, and it worked. I have since considered that letter my best justification for getting an undergrad. degree in English! That being said, I received an authorization letter for a cochlear implant (!) in response to the appeal letter ... but after a few frantic phone calls I discovered that the person inputting the coding had just messed up; all the other documentation on file at the insurance company referred to the BAHA.

More and more insurance companies are becoming familiar with the BAHA, so hopefully you won't have to launch a full-scale attack. Be sure to refer to the BAHA as a prosthetic and emphasize that it is not a hearing aid. Mention that Medicare now includes BAHAs in its coverage policy. I certainly think it's worth the effort, and I would suggest starting sooner rather than later.

Best wishes,

Catherine (JerseyGirl 2)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ