Got my TransEar...I can hear you now!!!

[ada]

Hi Cheryl and everyone.

 My name is Ada and I am new to this site. My surgery was 2 years ago in Manhattan and I was left with one sided deafness.   My intention was to get some feedback regarding the BAHA and Cocklear implants.  But minor surgery is involved.  I am not thrilled with anymore surgery.  Was I happy to hear about this Transear earing devise.  I have not been to an audiologist as yet, but I am so excited to hear about this.  Is the Baha a thing of the pas?.  I will certainly go on the web and look up Transear.  I don't want to get to excited but I can't help it when I hear how it is working for you.  I am going through all the same situations with not hearing and it is very frustrating..

A funny story.  When someone is sitting on my right, which is the ear affected I tend to turn my neck and head quickly so that I can hear out of my left ear.  I was sitting with a group and the women to my right was  talking to me.  I kept swinging my head over and over to hear her.  I finally said to her, please excuse me I know it might seem odd that I keep flipping my head but I have one sided deafness.  Ok she said, I thought you had a bad nervous tick.  We both laughed, but actually it wasn't funny.

 I will continue to read your progress and if I get any other information I will let you know.

Thanks so very much for giving me hope.

[Boppie]

To be fair to everyone...BAHA is a great product!  It is a fine bone conduction aid for those who want the convenience of not having to wear a unit in the ear.  It is worn on an abutment attached to the head several inches back from the ear.

TransEar uses bone conduction via one unit inserted in the deaf ear canal.

[Static]

Pal,
I can remember all the things we went through over the years with my first golden and I wonder how we made it through all the expense but I, like Cheryl, would do it all over again.  Hopefully Zoey will be more healthy for her own good, but I will find a way for whatever she may need.  She brings so much joy to all of us!  Hang in there Cheryl, I'll be thinking of you!
~~Karen

[matti]

Hi Ada  and welcome!!! - BAHA is a wonderful device, but I have extreme head sensitivity on my AN side, so I was told that I was not a candidate. Both BAHA and TransEar work on the same principal of bone conduction, but with a different application process.

I ended up going to physical therapy about a 6 months after my surgery because the neck and shoulder muscles on my right were so painful. Turns out it was because of having to constantly turn/flip my head to hear. The other patients in the physical therapy room thought it was humorous (I didn't ) 

If you are interested in TransEar, call the number off the website and they will refer you to an audiologist or hearing aid expert in your area. They are fairly new on the market, so not many centers know about them yet. As you have read in some of my posts, I am having some issues with my TransEar, but it is not with the company, as they (Rick Gilbert V.P. and general manager ) have been a pleasure to work with. My issue is with my audiologist

Boppie and I will continue to keep you updated and Jeanlea will be the next new recipient of a TransEar, so looking forward to her updates as well.

Again, welcome to the forum, this site has been a lifesaver for me and I know you will feel the same, as we are one big happy and supportive family.

hugs,
Cheryl

[Captain Deb]

Ada,
According to the pros at House Ear, a cochlear implant is contraindicated for people with SSD and only used for those with total hearing loss in both ears. The sound is quite distorted and would cause a conflict with the remaining good hearing.

Capt Deb

[okiesandy]

I am going to add my two cents to this conversation. My neurotologist (Dr. Ego) would never listen to my plea for a hearing aid for my single sided deafness. He said I was doing fine with out one. Like he would know. I only see him in a small quiet room. I have had to leave places because of the backgournd noise. I have had to remind everyone that I have to have creative seating when we go out to eat.

When I read about the Transear I approached the subject with Dr. Ego and he said he didn't see why I needed one and why didn't I get a BAHA? Dang, does this guy ever listen? I have AIED in my only hearing ear and will in all probability be deaf sooner or later. Now why in the world would I want a useless screw in my head with a CI on the other side? I really pushed for the transear. He said they did not fit them.

 I called the Transear people for a name of a doctor in my area or the nearest place to me where I could get one. I called both of the doctors and neither had ever fitted one and neither had ever heard of them. I  just about had to beg to have the doctor check into it. Now that he has, he is as anxious as I am to see what this can do. I told him my doctor said wait a couple of years before being fitted with a hearing aid. He said that is not a good idea. He gave me some pamplets that say if you lose hearing in one ear your good or better ear will lose some of its ability to understand speech. We are made to hear out of both ears. Duh! now why do the doctors think we should wait for a hearing aid?

I will go Friday to pickup my Transear and have adjustments. He says in his opinion this is a far better option than having something in both ears such as a Cross. He does BAHA's, Cross and CI. I told him I can hear on one of our phones out of my deaf ear. He did not laugh at me like the neurotologist. He did tell me that you could install a bone conducted aid on a tooth or any place on your head and you would be able to hear or at least have the sensation of hearing. His opinion is that if it improves your quality of life in anyway it is for the good. Now, if I could just get Dr. Ego to feel this way, I would feel a lot better.

 I don't know about the rest of you but, I have never felt so confused and mistreated as I have during my AN journey. For something that is supposed to be so rare, I am sure running into a lot of people that have An's and boy do I hear a lot of horror stories. How long do you think it should take doctors to get on the same page? Even in the same book? We only have 6 neurotologist in my city and 4 work for one clinic and 2 at the other. They all tell the biggest most scary stories about CK and GK and make surgery look like a walk in the park. All think you should just adjust your life and deal with the after effects. As for me I intend to be as close to my former normal as possible and what ever it takes is what I will do. I want a danged transear and now I will have one. I am finished with just taking the doctor's word for anything. Just my opinion here folks. Do what you think is best for you. These people are not God!

Sandy

[matti]

Sandy I am so sorry and can totally relate. This whole AN journey is frustrating and scary enough without having conflicting opinions and thoughts from doctors, audiologists, therapist, etc...  Half way into this journey I learned to become my own advocate, fight for what I want and move on if I didn't get the respect, time and understanding from someone in the medical community. My sister-in-law's mom just passed away unexpectedly from a misdiagnosis. She was a breast cancer survivor for 8 years and began having symptoms a year ago which her doctor wrote off, she never questioned him or pursued any other opinions and died within three weeks of diagnosis.

I am glad to hear that you are getting a TransEar, I know you will be happy with it!! Please post when you get it, I would love to hear your experiences.


TRANSEAR UPDATE for Monday Jan. 8th

Saw the audiologist today and we are now remaking theTransEar, this will be #3, so keeping my fingers crossed that 3rd time is a charm and the TransEar people don't wish me away
With #2, the outer visable area on the transfer unit extends too far out, the first one sat  flush and was more comfortable, but not tight enough deep into the canal to transfer adequate sound.  I am now wearing the second one after my audiologist filed down(turns out I can also do this at home) two areas on the unit that were uncomfortable while talking and eating. So taking #2 for a test drive until #3 arrives in a couple of weeks. Boy this is confusing

I am extremely positive will we get this right. I really like the product and have experienced some great benefits so far.

Cheryl

[Palace]

 

I'm happy for you.

Molokai dog his his arm aspirated, toes trimmed and I will get back to you privately what they think his lumps are.  I might know by tonight.

Good for you and I hope your TransEar Journey turns out well.



Palace

[okiesandy]

Cheryl,

Sorry you have to have yet another Transear. As my doctor said, it is in the fitting. This is a new product and I assume like everything else there will be kinks to work out. My doctor assured me the transear people will work with you as long as needed to get a good fit. Don't give up, it will work out.

Sandy

[matti]

Sandy - TransEar and especially Rick Gilbert (VP and general manager) have been absolutely wonderful to work with throughout this whole process and that is why I am very confident that thiings will work out well.

Palace - Keeping my fingers crossed for Molokai, I know he will OK, after all, he's got a great mommy

Cheryl

[okiesandy]

Grrrrrrrrrrrrrr!!!!

My doctor just called. I had molds made 12/22/06.  Was expecting a transaid Friday. Nope! Not to be. Molds did not work with equiptment and now have to be done again. I had hoped to have this by Christmas. I just didn't specify which Christmas. I juess I am a little short in the patience department now. I go for 1 year MRI Wed. Which by the way was canceled and rescheduled at the last minute. I don't know why I spazz so much before these MRI's.  I am very calm until about 3 days before and then just worry and think all sorts of things. I really think I would like it if "Ivan the Terrible" would just fall out of my ear some night while I am sleeping.

Sandy

[Jeanlea]

Sandy,

How very frustrating for you.  Guess this whole process is about learning patience.  It will work out for you eventually, along with Matti.  Good luck with your MRI on Wednesday.  I'll be thinking good thoughts for you. 

Jean 

[Boppie]

I am going to ask Nate if he had more than 30 days to adjust to his Cros. 

I would be frustrated if I were having trouble getting my TransEar fitted right.  But we can see that getting a common fit for each patient is part of the stumbling block for developing such a unique ear mold.  The first time I saw my ear unit, I was astounded at its shape.  The ear canal actually has the S shape I have read about.  At least mine is a big S! 

Good luck Jean, Sandy and Cheryl.

Jean I like your picture.  Your smile is updated, right?

[matti]

Sandy - Well that sucks!!!!  

Once the new molds are taken, ask the to audiologist to overnight them to TransEar. I wonder what was different about the molding material that did not work for TransEar?  If you ordered a standard tan processor then the wait time is much shorter as those are a stock item. Different colors (mine is brown to match my hair) have to be ordered out.  Also ask your audiologist to order you an extra lead wire, which connects the processor to the Transfer unit. I had to replace mine early on and luckily I had an extra on hand.

I think it's normal to be nervous before an MRI, I know I become a wreck about 1 week before and stay that way until I see the doctor. Since I have had so many MRI's and if my doctor can't see me within a day, I have asked him to please call me, so that I can finally relax. I know you will hear good news

Boppie -  when I first saw my TransEar unit, I was surprised to see how my ear canal was shaped....not a very attractive looking thing LOL

Cheryl

[Captain Deb]

Boppie, Matti and Sandy
Thank you so much for being the "Transear Guinea Pigs" for the rest of us. I am already growing my hair out for mine. I really hope that I can get one next year--this social isolation thing is really bugging me.  Also it is really hard for me to be around my grandkids in their new house--smooth, vaulted ceilings and hardwood floors really add to the noise level on my poor over-sensitive good ear. Thanks for keeping us posted on your "transear Journeys."

Capt Deb