ANA Discussion Forum
General Category => Hearing Issues => Topic started by: kaykay on June 10, 2011, 06:00:15 am
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Last night I picked up my Transear...the company sent the old model and the new model. I tried both in the office, and the audiologist asked if I could hear a difference in her voice. Nope. sounded the same.
I took them home anyways to test them out some more, but I tried again this morning before i went to work..........no difference. :(
This sucks.
Last month I talked to the Soundbite company and they said it wont be available in WI until the late fall. :(
That sucks even more.
Nothing like being so excited..and then being shot down. just gotta love it. (im being sarcastic)
and I refuse to have a hole drilled in my head and wear a BAHA.
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Sorry that it is not what you had hoped for...maybe the audiologist can do some tweaking.
Just out of curiosity, why are you so opposed to a BAHA? I don't have one, myself, so I am not biased...you just sound pretty strongly against it & I was wondering why...Everyone is certainly entitled to their own opinion! :)
K ;D
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Kaykay
I was like you and refused to have another hole in my head let alone have another surgery. I originally looked at the CROS system. After doing some research I decided it wasn't for me. I did some research on the Transear and liked what read. I was all set to go ahead with it until I found out that our insurance company will pay for it because it is not a "hearing aid". Early in my research I discounted the BAHA because, like you, I didn't want another hole in my head and to go thru another surgery. My AN surgery was in Aug, 2010 and 9.5 hrs long. Anyway, I had the BAHA surgery in Nov 2010 and my BAHA was activated 4 months ago. I took 3 trips to get it tuned to my liking, now I love it and actually feel lost when I don't have it on.
I oversold myself on the BAHA at first and thought it would be as good as my left ear once was. I finally got it thru my thick skull, probally thru one of the holes in it, that it would never replace my hearing but it is a vast improvement over SSD.
If you have any questions on a BAHA just message me. I am from WI also.
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First of all, I'm really sorry about your disappointment. I know that can really be crushing. I have a BAHA, and I was hoping it would restore me to near normal hearing, and I was disappointed when I first heard it. My expectations were set way too high. As I used the BAHA, I became more accepting of what it does, and I am super happy to have it. You might not want to give up on the Transear so soon. You will never get that good old hearing back, so just give yourself an opportunity to use it for a few days. I will suggest that you buy a set of the crushable foam ear plugs, and block your good ear, and just use the transear for hearing for at least a day. It might suprise you.
Getting a BAHA is usually covered by insurance, and it really is not a big deal to get it done. It is easily covered by hair, and even if it is seen, most people ask about it, and I'm happy to explain. Just this morning, I had a retired surgeon see it and asked if I had an AN...his mother had one, and she has a BAHA...small world.
My good ear is rapidly getting worse, and I will get a cochlear implant when it is time. My nerve on my AN side was preserved for that purpose. I know that it will not sound like what I hear now, but that will not stop me. The technology is changing, but right now the BAHA/Ponto Pro are top drawer. Come join the club!
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I am sorry that you were disappointed. I have had the Transear for a few months and overall I have been satisfied. It is not as good as regular hearing, of course. My audiologist tested me with and without the Transear. On my AN ear, I tested at 0 without the Transear and 85 with it. I tried the Baha (test headset) and to me, the Transear is at least comparable to the Baha test headset. I still struggle to understand words if there is a lot of background noise (such as in restaurants). I work in a courtroom and the Transear has been very useful to me in that setting. I do not wear it much at home because it is not as needed and I am cheap on batteries. Keep us posted. Susan
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No hole in my head either:) Transear sucks, tried it for 4 months- waste of money
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My opinion - absolutely nothing wrong with having a "hole in your head" if it helps you hear.
And I say that sincerely, and from experience.
BAHAs aren't for everyone, but those who have them are very happy with them. And personally not having to wear something in my ear - or in my mouth - thrills the hell out of me.
You couldn't pay me enough to use a Soundbite.
Just my two cents worth,
Jan
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KK,
I have been "testing" a Transear since lat Feb. I am not satisfied with it, but I can say they are super to work with. I too had my expectations way too high. Neither the Transear or BAHA will ever make you feel like you have your hearing back. My experience has been it does not really make you "hear" from the bad side in everyday life, it's really not noticeably different . But more you notice how deaf you are when your not wearing it. Like you they originally sent one of each the old and new models. I started off with the newer model. After a week or so we concluded the fit was not good so they remade it and I tried the older, larger model while waiting for the remake to show up. I did not like the vibration of the older model at all, so I only lasted a day with it. Then the remake stopped working, a short or something from the audiologist changing out the wires, bent a pin inside. So they remade it again, and it unfortunately was remade to the size of the first one which was not right. So they remade it yet again. Each time they have extended my trial period. I tested really really well in the audiologist office, but I find that when I am out and about, I don't feel it is helping me any. If I block my good ear, like when watching TV, I can hear the sound transfer to my good ear real well, but as soon as I move, of talk (movement of jaw) I seem to loose the contact with the bone on the inside of the ear canal. If I push it in deeper I get the contact back again. So the fit is still not right and I am starting to think we are probably at the end of trying it. It could very well be the shape of MY ear canal that is causing it. The audiologist was going to talk to Transear about maybe making it one last time making it a little longer. It's hard since they are working off a mold and not seeing me in person. I am VERY disappointed, but I am VERY happy with the customer service I have received from Transear. I am hopeful that there will someday be a device like this that will work better for me. As far as a Baha goes, I too am not in a hurry to have another surgery. And after trying out the transear, I'm not convinced that a BAHA or Transear will help all that much. But any help would be great, just not at the expense of surgery for me. As for Soundbite, I am not thrilled with the idea of having to wear something inside the mouth as well as inside the ear and behind the ear. Too many parts and batteries.
Patti UT
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kay kay and Patti;
Must say the audiologist needs to take some time with this if even it comes down to hand sanding the half shell in order for it to fit perfectly. I mean, exactly perfectly!
I wonder how many truly dedicated and knowledgeable specialist exist to fit Transear.
With either BAHA, or Transear, I wonder if we aren't looking at a skull vibration transferance rate of only 60% or less.
Life is certainly less complicated w/o Cros devices and one gets used to single sided deafness.
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a Fellow local AN'er says she puts an ear plug in her good ear when out and about, it seems to muffle out any background noise and lets her hear someone talking to her, she claims it works especially good in a restaurant. I will have to try this, and maybe just use that as my 'helper" since Transear is not working. I agree, It needs to fit "perfectally" I don't think there are many audiologist able to fit it well enough. I think the mold didn't go deep enough to begin with.
Anyway, since trying the Transear, I feel it has made my tinnitus worse. (as if it could get any louder ???) I'm thinking it has confused my brain and so the "T" has been trained up. especially within 15 min or so after taking the Transear out.
Patti UT
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I sent it back yesterday. I tried wearing it at work........didnt hear squat. I really think she didnt take a good mold. I could feel it move when I ate.
and the thing is....i had to go back twice for molds. first mold she took was the wrong material. (she hasnt fit anyone with it in 2 years)...and when i had that done...wow! did i feel that foam thing going in. holy crap. LOL.
when i went back the 2nd time to get the correct material....when she put the foam thing in I didnt feel anything. so i dont think she went far enough.
I really dont want to drive all that way again. So Im just gonna wait. I have near perfect hearing in my good ear...and sometimes i think my brain doesnt realize I am deaf on one side.
Im just gonna wait for the Soundbite. figured I had braces and retainers...and a permanent retainer....think I can handle something attached to a tooth. keeping my fingers crossed.
I give kudos to everyone that got the BAHA but its just not for me. Im just dont want anymore surgeries...
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I give kudos to everyone that got the BAHA but its just not for me. Im just dont want anymore surgeries...
Kaykay - I can totally relate to that comment. After my AN surgery - a BIG surgery - I didn't even want to think about something involving my head and a sharp object ;)
However, BAHA implant surgery is absolutely nothing like AN surgery. It's quick, outpatient, can be done with local, and they don't open up your head (although they do drill a hole in it).
For the majority of BAHA recipients, there are no surgical or healing complications. It's similar to going to the dentist to have a cavity filled - except for the healing involved, which can take a little time.
You are right, it's not for everyone, but don't let the fear of another big surgery stop you.
Jan
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Hi KayKay,
So sorry to hear about the Transear experience. I do know people who love their Transear, so wondering if the fact that your audiologist doesn't seem to do many of them is part of the problem. When I was researching this for myself, I also remember reading that if you have a narrow ear canal, it can be hard to fit. Like you, I was in no mood for more surgery, but I finally did go ahead after nearly 3 years and get a baha. Very happy with my decision, but also understand the desire not to have any more holes in your head!
One thing I want to mention. When I was getting my baha "installed" the audiologist told me that I should wear it every day, even if I wasn't going to be in situations where I thought I needed it. She said that my brain needed time to adjust to the new noise source, and the fact that it is a very different type of sound than what the brain is used to receiving. She said that if I only wore it occasionally, I would not get the full value. I would imagine that the Transear is the same way, since it also relies on bone conduction. I do not consciously hear a difference when I am wearing my baha, but what I notice is that I hear conversations that I was never able to hear before, if that makes sense. It's made a huge difference in terms of the quality of my life.
Debbi
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Deb, I sure do know what you mean... I dont hear any difference when wearing the Baha..but when not wearing it is when I notice the difference...If that makes any sense...I quite often plug my good ear to hear only from the Baha..and marvel at the technology
JO
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Jo, that's SO funny! I do the exact same thing - when I'm sitting in a restaurant, when I'm driving down the road, when I'm watching tv ... I cover my hearing ear just so I can hear with my "digital ear." I guess I am easily amused!
I also used the "share with a friend" rod and let my 3 1/2 year old grand nephew try it - he shrieked (ow) with delight and asked his mom if he could have "an ear like Aunt Debbi." So funny.
Debbi
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Dear All,
There are two issues here that I want to address.
First, getting an excellent fit, not a good fit but an excellent fit is what is needed for the TransEar and the Sonnitus SoundBite. I remember several months back someone posted on the Forum that they had gone to the TransEar company themselves over in Tennessee which was only a three hour drive away and had an excellent experience. They are the true experts and someone that does it once in two years doesn't know squat. You're just setting yourselves up for failure. I come from NY and my mother would find out the expert and took me to the best so my advice stemming way back from my NY mother is to take yourselves to Tennessee if it is the TransEar that you want. I talked with the rep in Cincinnatti last weekend and they have the actual inventors practice right in town where they would send you. This is the place to make you successful.
Secondly, I am diagnosed with Ehlers Danlos Syndrome which is why I've had such a terrible recovery. My two daughters also have it. Google it and you'll see what I mean. One of the problems is scar tissue. My daughter while she was in Middle School had to have three plastic surgeries to get rid of a blood time test scar made with a razor blade at NIH, a chicken pox scar on her thigh and a poison ivy scar on her ankle. They were all large keloids. We all have platelet abnormalities and Ani has Celiac Disease and so does her son so they are off gluten.
The point I'm making here is that this to do or not to do BAHA question is very individual and I love you Jan, but I can't just can't have another surgery and the BAHA with the violent way that I scar would present problems galore. That's just my family. We have Ehlers Danlos Syndrome as diagnosed by Dr. Francomano a geneticist formerly of the Genome Project and now in private practice. I had my excision surgery on May 26 and the stitches out on Tuesday. Dr. Ducic said there was so much scar tissue trapping my nerves and he had to work on removing the scars before he could work on the nerve excision. Now I am feeling much much better since the excision and removal of the scar tissue. What is interesting to note that back in the Summer 2010 my Beijing accupuncturist said it was the scar tissue that was causing my headaches and he couldn't help me.
There are just some of us that make crappy paitients and I and my family are in that group. We scar, have myofacial pain (also part of Ehlers Danlos) and just take forever to recover. We can't join you Jan as much as we would like to. For us, even a small BAHA surgery is MAJOR!!! That's why Dr. Ducic's ears perked up when I told him I had Ehlers Danlos Syndrome. We have to move through life carefully and not have too much surgery. I've already had more than my share which was unfortunate for my life and my time childrearing. Recovering from surgery and not being able to run or dance because of the paralyzed vocal cord has been major, but I've survived.
So please Forumites, we are not doctors and must remember when giving out advice that one of these BAHA surgeries is no big deal is leading someone down the wrong path. Dr. Niparko's resident came in to my room to tell me about the BAHA and on my follow up visit Dr. Niparko was disappointed that I wasn't interested. I was still last Spring dealing with major one sided brain wrecks and all he was interested in was more surgery.
The Sonnitus is available at GW in Sept. if you are interested in coming to Washington.
You can contact me if you want the contact information.
I hope I've made my point.
Hugs to all of this large diverse group!
Mei Mei
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Mei Mei ~
Thanks for your informative post and a distinct point of view. I want to add that those who have and are enthusiastic about a BAHA implant & processor almost always add the caveat that 'it isn't for everyone', and they are correct, as your post emphasized. It isn't for me. At least, right now. I cope well with my SSD, am retired so work-related issues don't arise and, frankly, I just don't feel the need for a BAHA. I wish to add that this could change because, in life, there are few absolutes. I re-read the posts on this thread from those who are very pleased with their BAHA and they all include some use of a qualifier such as 'most'or 'usually' allowing for the reality that not every BAHA patient has a pain-fee abutment installation or a trouble-free BAHA experience. I believe that the best form of advice is to simply state "in my experience", which is accurate and allows for the fact that not everyone will have the identical experience. Meanwhile, I'm glad to know that things are improving for you and I appreciate your contributions to the forums.
Jim
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Thank you, Jim. You are a true linguist and I and Noam Chomsky would appreciate that. Yes there are no absolutes and each patient is an individual which is what I learned even before I ever entered clinical practicum.
Was looking for you at the Symposium last weekend but you were nowhere to be found. Perhaps you'll make it to LA. I am determined to go to LA because my favorite hamburger is served at Ruby's at the end of the dock facing the Pacific and Santa Catalina Island in the wonderful small town of Balboa Beach and Balboa Island. I hope that the Forumites and the Docs will join me either for breakfast or dinner out at Ruby's pier on Balboa Beach. It is a treat not to be missed.
Mei Mei
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Mei Mei -
glad to hear you love me ;D
I've always said that the BAHA isn't for everyone, but for those who decide it is for them it's a fantastic invention. I'm still in awe of it. And like many who post on the Forum, I use the disclaimer that I'm not a doctor.
I do a lot of volunteer work with Cochlear and with potential candidates from my neurotologist's practice; I'm a huge advocate of the BAHA since it's made a huge difference in my life.
I love you too; even if you don't have a BAHA. I'm not prejudice :)
I truly hope the Sonnitus works wonders for you :-*
Best,
Jan
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Thanks, Jan! Now git to bed. It's late.
Mei Mei
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Mei Mei,
Have you ever looking into the CROS device (I think that is what it is called). Now there is a woman on the facebook page for Sudden Hearing Loss/Tinnitus that just got hers. She is able to try it out for 30 days and if not happy or able to adjust to it she will get all money back. Just had to share.
Denise (MI)
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Thank you, Denise. I'll look into it. I didn't know it was for SSD. Time to make an appointment at GW Hearing Center.
Mei Mei
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Mei Mei
I tried the CROS and its great...Its just two behind the ear aids....The one on the deaf ear transfers the sound waves to the good ear. I think DL was going that route or was going to try it out...
JO
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KK,
I was all set to send the Transear back, but they (Transear) really wanted to give it one more try so the audiologist made a new mold and they are re making it yet again. I am doubtful though, but we will see. The thing about the BAHA that keeps me from considering it is I read about people having to brush the skin around the abutment to keep the skin from growing over it. Even years later. And stories fo irritated skin around it years later etc. My audiologist just (end of May)went through the training fdor Sound Bite and had a sample to show me. She said you have to have perfect hearing in the good ear to be eligible for it. I have slight loss in my good ear so don't think it will work for me. However, It looked kind of cumbersome. The mouthpeice is larger than I expected and holds a battery. (kind of weird having a battery insie your mouth) and the ear peice also has a battery in it. The earpeice is like the Transear but the part that gpoes insdie the ear does not go so deep because the conduction is being done through the teeth/bone. Both batteries are rechargable which is nice. She said the price is going to be around $8000.00 and we know most insurance won't touch it. But she said they are offering for a periodof time to get the product out there a $1500.00 paid by patient. They will try to bill insurance for the differance but it they don't pay they will at it. She didn't know how long that will last so you may want to be looking at it ASAP.
patti UT
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I was at a big party last night in Washington. There were four large tables and people were talking with me but I couldn't understand anything from the right side. I really felt out of it not being able to hear from one half of the table. It was a very frustrating experience. Finally I confided in the man on my left that I couldn't hear the people on the other side of the table. He took out his iPhone and asked me for the links to ANAUSA, Cnet.com and ewg.org and emfsafetystore.com
i feel I have to tell everyone I meet about the possibility of hearing problems and the data is not back about cell phones and cordless phones but being careful can't hurt.
Mei Mei