Author Topic: I have lots of questions for anyone willing to answer  (Read 2498 times)

amymeri

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I have lots of questions for anyone willing to answer
« on: January 23, 2008, 09:31:40 am »
I am almost 2 years post surgery and have 100% hearing loss on my right and 100% good hearing on my left!  Most of the time my SSD isn't a huge problem, but lately it's been bothering me more.  I am tired of asking people to repeat themselves. 

I am making an appointment with an audiologist for next month to explore different options (BAHA or Transear) although I have to get my insurance to pay.  My ENT says he has been pretty successful getting the BAHA paid for by insurance.

A couple questions

1.  How long were you SSD before getting the device (whichever one) and does the length of time you are deaf make a difference on how well it works?

2.  Did anyone experience this wierd free floating anxiety that I am experiencing about this process?

3.  When you hear something does it still always sound like its coming from the "good side"?

4.  Did anyone with the BAHA have soreness around the restrosigmoid surgery site and did that increase or interfere with BAHA placement?

Thanks for any answers!
Amy

4 cm right AN removed restrosigmoid 4/13/06
Partial facial paralysis, SSD and trigeminal numbness for now

lori67

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Re: I have lots of questions for anyone willing to answer
« Reply #1 on: January 23, 2008, 10:48:08 am »
Hi Amy.  I can answer a few of your questions from my own experience..

I had my surgery on February 20th, 2007 and then had the BAHA implant done in November, 2007 - so I was SSD for about 9 months.  I don't think the length of time would make a difference in how well it works.  I think that maybe the longer you don't have it, the more accustomed you become to the deafness.  Just a thought.  I didn't  feel any sort of anxiety all all.  I was just anxious to get it done.  I had a very hard time adjusting to the SSD, as my hearing was 100% in that ear before surgery.  I also figured that after surviving brain surgery quite well, I didn't have anything to lose or be afraid of - this was a walk in the park compared to the first surgery - at least as far as my surgeon was concerned.

I got my processor at the beginning of this month and I'm still playing around with the settings and such to figure out what works best in what situation.  When I hear something from that side, it does sound like it's coming from that side - sortof.  It's like my brain doesn't know it's all going in one ear, but I still can't tell what direction things are coming from most of the time.  That probably doesn't make sense.  It's not perfect and I don't always hear every word, but at least if someone does talk to me on that side, I know to turn to look at them and that makes it easier.  And if I don't hear every word, I usually hear enough to know what they're talking about and don't have to have them repeat themselves.  I've tried it out at a restaurant (although a pretty quiet one) at a round table and I could hear everyone on my deaf side.  I've had conversations with my kids while shopping and they were on my bad side and I heard them.  It is definitely not going to sound like your old ear, but in my opinion, anything is better than nothing.

I didn't have retrosigmoid, so I'm not sure exactly where your incision is. I'm guessing it's further back and lower than mine.  I had translab so mine is above and behind my ear.  I didn't have any soreness from the implant or from the processor.  I know it takes some people a while for the implant site to heal enough to attach the processor, but I got mine at 8 weeks post-op.

I hope this helps.  My doctor said they have been getting the BAHA paid for by insurance too so I guess as it gets more common, that will get easier.  Have you checked out the BAHA website or tried the simulator in the doctors or audiologists office?

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Boppie

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Re: I have lots of questions for anyone willing to answer
« Reply #2 on: January 23, 2008, 05:54:17 pm »
You will still hear as if the sound was coming from the good side.  Some of us feel it is easier to figure out where sounds are located as long as they are in front or beside you.  I find the sounds behind me are still tricky to locate on first try.  Although I do less head swiveling with my TransEar in.

People gets BAHAs and TransEars within a few months of surgery.  There is no waiting period for bone conduction to occur.  Perhaps a sore incision area would warrant waiting a while longer, but since your surgery was 2 years ago, I doubt you need to wait another minute to try a hearing aid for SSD. 
« Last Edit: January 23, 2008, 05:57:49 pm by Boppie »

ChrisB

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Re: I have lots of questions for anyone willing to answer
« Reply #3 on: January 25, 2008, 09:27:36 am »
I fully agree with Boppie.  My SSD was the result of sudden sensorineural hearing loss - literally woke up one morning 100% deaf on one side.  So though the cause is different, the result is the same.  Fortunately, I only dealt with relatively minor balance problems, and some minor facial numbness, both of which resolved over a few months (the balance faster than the facial numbness).  I ended up with a TransEar, partly due to cost (insurance wouldn't pay for either a BAHA or Transear - or a CROS, for that matter).  I didn't like the idea of something in both ears (the Cros), and drilling into my skull - though generally successful without complications in most cases - just wasn't something I wanted to do even if I could afford the BAHA.  I've had a large number of problems with the TransEar, many the result of issues with the audiologist and her attitude toward the device, and limited willingness to work to get the programming done RIGHT (the company - Ear Technology - is quite willing to work closely with audiologists, even doing over-the-phone help during the actual programming of a patient's TransEar).  There were also a high number of electronic/mechanical problems with my TransEar that do NOT seem to be representative of the device, according to what I've read here.

At two years, I highly recommend doing something about the SSD.  While subtle at times, the difference between having my TransEar and not having it is major!  I was recently without it for 3 weeks due to a breakdown just before the holidays, and I could not wait to get it back.  The difference with vs. without is not subtle at all - only the "apparent" assist it gives seems subtle while you're wearing it.  Without it, you immediately realize just how much it helps once you get used to it.  I just hit the 1 year point this week with the TransEar, and am very glad I stuck it out.

For anyone just out of surgery (or very recent SSNHL), I personally recommend getting used to SSD for a couple or three months.  There's an adjustment period, essentially comprised of the five stages of grief that people go through with the loss of a loved one, or even the loss of a limb.  To suddenly lose all directional capability, often be unable to comprehend what someone is saying even though you hear their voice loud enough, etc. - that takes some getting used to.  I sincerely believe that if I'd tried the TransEar within the first 3 months or so, I probably would have sent it back within the 1-month evaluation period.  I needed to get used to what SSD was like before I could appreciate the difference between it and having the TransEar (I've read some posts from BAHA users who also report that the difference can seem subtle at times - until you DON'T have it on/in, then you notice the difference in very UNsubtle ways).

I'd say, "Go for it, and go for it now!"  You owe it to yourself.  You're likely to be less anxious, less irritable, easier to be around for others, and just plain enjoy life a whole lot more.  Unlike Boppie, I haven't noticed any directional ability at all, but I'd still not be without the significant difference having this device gives me.

Chris

 


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