Questions about BAHA

[Nancy T]

Hi, everyone. I don't have an acoustic neuroma but do have a severe unilateral hearing loss and figured this is a good place to ask about experiences with BAHA, whose existence I recently discovered! I'm planning to consult with an audiologist to see if I can get one.

(I lost most of the hearing in my left ear when I sneezed hard six years ago. They never figured out why. My hearing loss and ABR apparently look just like acoustic neuroma, but the MRI cleared me. The ABR is also bad in my right ear, but my right ear hears perfectly.)

I've read a little about BAHA in the last few days (including on the Entific site), but am wondering whether anyone has personal experience or further knowledge about certain things:

1. How common are surgical complications with the implant? What can go wrong?

2. Can the thing get infected later on?

3. How many of these surgeries would you want your surgeon to have done in order to consider him or her sufficiently experienced with it?

4. Can you ever have the implant or at least the abutment (?) removed later on if you want to get rid of it for any reason?

5. How far does the processor stick out? Does it often get caught on combs, doorjambs, cupboard doors, or other places where you're navigating sometimes tight quarters?

6. Same question for the abutment--if you accidentally catch it on something too hard, is it likely to rip your skin or flesh out?? (Gross question, but I'm really wondering how tight that thing is stuck in your head; I have visions of it being ripped out like an earring from a pierced ear!)

7. I tend to sweat a lot and get "steamed up" when working at my active job, or just from "hot flashes" or warm, humid weather. If you have sweat rolling off your head, do you have to take the processor off? Work is where I really want to hear on my left side.

8. Anyone had any increase in tinnitus or dizziness after the BAHA surgery, or from wearing it? I have had both tinnitus and dizziness since my hearing loss, and I tend to get dizzier from low-frequency vibrations such as heavy equipment working on our street. I wonder if passing additional vibrations through my skull might make this worse?

9. How reliable is the test thingie they give you to try? Has anyone tried it and expected a good result from the BAHA but not gotten good results after all?

Of course, I can ask the audiologist or doctor these questions (if they ever call me back so I can make an appointment!). But I would like to hear from people who've used this or have heard more about it. I have been turning my head and saying "What? What?" for six years now and figured I would be doing that all my life; but now that I've found out about the BAHA, I am excited and can't wait to see if it might work for me!

I would appreciate any comments, personal or second-hand experiences, information-sharing, etc.

Thanks and best of luck to you all. I learned a little about AN when I was waiting for my MRI results during those 10 long days in August 1999, and I went from a naive "Oh, maybe a benign tumor? No big deal, they take it out and you get your hearing back" to "Oh my gosh! Gold weights in the eyelid!? Facial damage!? Possibility of dying!?" (Wish I hadn't had the Internet then--I read a lot of scary stories on this forum at that time--but if I HAD turned out to have an AN, I would have been better prepared.) And I have had problems with dizziness for years, so I know that's not fun for those of you who suffer from it.

Thanks,

Nancy T. in Portland, OR

[Dave_S121]

Nancy, I've had a BAHA since March and will try to answer and pass on my experiences.

1. I'm not sure how common complications are.  I got my abutment in October 2004 during the same surgery I had my AN removed.  I did have some post surgery complications from the BAHA procedure in that the skin around my abutment wanted to grow over and cover the abutment.  I had 2 procedures to clean the area out, the second one in Feb. 2005 when they removed all the skin around my abutment and then grafted a small piece of skin over.  That seemed to work and I got my processor 3 weeks later. 

2.  I'm not sure, I haven't had that problem.  I did see my doctor in May and he removed a small piece of skin that was growing around the site.  I see him again next week and from what I have seen, my site is clean.

3.  Like anything else with these surgeries the more they have done the better experienced.  Entific maintains a listing of doctors in your area who perform the procedure.

4.  I'm not sure.  My doctor did talk about a patient that had their abutment fall out.  The patient worked in a dirty, factor condition and had a hard time keeping the area clean.

5.  The processor sticks out maybe an inch.  I wear my hair longer than before my surgery.  My hair covers the processor and doesn't interfer in any way with it.  The only problem I've had with tight quarters is not the processor itself sticking out, but I will get a audio feedback from the processor.

6.  I've never had any problems with the abutment.  You just get use to it.  I wash and comb my hair normally.  I had to go to a new person to cut my hair on Tuesday.  I just showed her my processor and abutment and she was able to cut my hair without any problems.

7.  I haven't noticed any problems with wearing it and sweating.  My audiologist told me sweating from working out shouldn't be a problem, along with light rain.   If it's raining hard than they suggested I remove the processor.

8.  I haven't notice any of those problems.

9.  The test for me lead me to believe I would notice a much greater change.  I've noticed an improvement, but not as much as I had hoped for, specially based on the test.  Other BAHA users I've spoken to have said the opposite.  The actual BAHA is better than the test lead them to believe it would be.

I hope these answer help.

Dave Skaja

[matti]

I have unilateral hearing loss as a result of my AN, which was removed in 1998. I am considering the BAHA and last year attended a seminar hosted by Entific and The California Ear Institute. I was able to take a test band home for a one week trial. The very first time I put it on, my husband was sitting on my deaf side and when he spoke, even though it was a little muffled and distant, I heard him. It was an emotional moment for me, as it had been over 6 years since I could hear on that side. When I wore it out in public I was not as excited with it as I was in a more quiet setting. I have heard of many people having problems with skin growing over the site and that has made me a bit nervous. It has been 7 years since my surgery and I still have quite a few problems on that side of my head and I am fearful that the BAHA will complicate things even more. Somewhere down the road I will probably go for it!

If I were you, I would certainly take the test band home for a trial run. My surgeon claims he has not had any patients that have had complications and he has done many.

Matti

[Nancy T]

Matti and Dave, thank you very much for the responses. It sounds like people have had mixed experiences but everyone has had some improvement, and not too many complications.

Yesterday the audiologist told me that even if I turn out to be a candidate for the BAHA (I have an appointment next month to find out), my insurance company does not pay for it--not even for the surgery, even though the other insurances they have worked with have paid for both the surgery AND the processor.

So, best case, I will be put on a list to have the surgery in case my insurance company ever changes its corporate mind. Maybe I should suggest that they have a companywide "Wear a Cotton Ball and Earplug in Your Left Ear at Work Day." 

Thanks again,

Nancy T.

[Dave_S121]

Nancy, I'm not sure what who your insurance carrier is, but try and work with them.  I'm told that Medicare now pays for BAHA's and that is the bench mark for insurance companies to pick up coverage of a procedure.  Maybe some else on the list knows for sure.  What makes a lot of companies pick up the procedure is the realization that a BAHA is looked upon as a prosthetic device.  Like lossing a limb, we have lost the ability to fully use one of our senses.  The BAHA helps us compensate for that loss. 

Dave Skaja

[jenifyer]

Hi,

I am scheduled to get the BAHA in August.  My doctor said i might have to fight with the insurance company to pay for it and wrote a letter for me to send to them.  He said i might have to keep calling and writing but he thinks they would eventually pay for it.  As it turns out, my insurance does pay for it.   This might be helpful for you to do if you want them to pay for it. it can't hurt to try!

jennifer

[matti]

When I spoke to my insurance company last year regarding the BAHA, they had never heard of it and requested a letter from my surgeon. I was told at that time that I would only be entitled to my yearly hearing aid benefit and the surgery would not be covered. As of this year, the surgery is now covered and I still will receive the same hearing aid benefit as before. Glad I waited!

Matti

[Nancy T]

Hi Dave, Jennifer, Matti, thanks for the responses and the encouragement! I'm glad you were all able to get the BAHA!

My insurance is Blue Cross. The audiologist said that they have a sample letter I can write to the insurance company and that as more people ask for the BAHA, they may pay for it eventually. It sounds like clinics and Entific are working on getting insurance companies to pay for it if they don't already.

So hopefully I will have a chance at some point. After six years of being deaf on one side, I can wait a while longer.

My evaluation is not until August 10, so I won't know for another month whether I'm even a candidate for it. I think probably so; my hearing is normal in the lower frequencies, but above 500 Hz my hearing loss is 80-110 db, so I can't understand speech in that ear. My other ear hears perfectly (at least as of my last hearing test in 2000).

Have a good weekend, all.

Nancy

[jan pentecost]

My insurance would pay for the insertion of the BAHA but not the BAHA itself.....I have PacificSource...they okayed the AN surgery and the insertion procedure but not the actual deivce....talk with your insurance....but no guarantees. I didn't get the BAHA and probably won't unless my right ear decides to shut down, too.
jan

[Pembo]

HI. I have Bluecross and they just approved my BAHA. I see the dr next week to schedule the surgery. I'm very nervous about it but after wearing the trial headband I realized I'm missing more than I thought. Good luck to you.

[Nancy T]

Hi Pembo, I'm glad you're going to have the surgery! Good luck to you!

Good to hear that Blue Cross is covering it, at least in some states. Hard to believe that my insurance won't come around eventually.

Nancy

[gemaste]

I am glad I am reading some info. on BAHA and Blue Cross.  I am 2 weeks post surgery on my right side AN and doing very well.  I am totally deaf on my right side and having some ringing problems but I am interested in the BAHA in the future.  I am to meet with my doctors on Sept. 13 to disciss my options.    More info. needed.   How much difference did you notice??  i am very sketical about another surgery. Is this my only option??   Thanks Glenn   

[rntiggergirl]

Hi
Is Blue Cross covering the surgery and the extenal device.  I have blue cross and they only covered the surgery and not the external device, this was 6/04. 

Cheryl

[gemaste]

Hey I am not sure yet, I am just now getting into it, but thanks for your info.  Glenn

[Jennifer]

i got my BAHA sound processor (the new digital Divino) on july 12th. i've had it almost a month so i think i can post my thoughts on it. to answer your questions:

1. none that i know of. i originally had the implant put in during my first AN surgery and my doc put it in the wrong spot so when i went in to get the abutment, he had to put a new implant in. it really wasn't a complication, just frustrating that i had to wait another three months.

2. yes it can get infected if not kept clean. as long as you shower and wash it, you should be fine.

3. i dunno. for me, everything was so quick that i didn't get to ask. also, i had the only doctor in the area that is certified by entific to do this surgery. that left me with pretty much no choice. because it is a pretty simple procedure, he just has to have some experience.

4. i don't think so. my doctor said that if i ever didn't want it, i would just stop wearing the processor.

5. i haven't had any problem with the processor sticking out and hitting things. the only difficulty is when my long hair gets tangled in it and if i lay down without turning it off. then i get the whistling feedback sound.

6. i only think that would be a possibility in the first few months, before you get the processor. that's when it's still growing into the bone. even if it did get caught, i don't think it would pull the skin out, it would just hurt a lot.

7. sweat is not a problem. i got my processor just two weeks after my second AN surgery so the sweat irritated my scar but i think the BAHA was fine. if it's raining hard though, they recommend you take it off.

8. i didn't have any tinnitus before the BAHA and i still don't have any. there was one problem with the low frequency vibrations though. i was at a baseball game and turned the BAHA up because it was a loud environment. when the announcer spoke though, it was REALLY loud and i could really feel it. it was not very pleasant. that's the only circumstance though.

9. ummm, hehehe, i didn't actually test it before i got it. everything happened really quickly because my AN was large. they told me about the BAHA and i thought it was a great idea so they went ahead and put the implant in during my surgery. i got to test it later though, at a BAHA seminar before i got my processor. it was pretty cool. it wasn't a big difference but it was cool to "hear" from my right side.


the one thing that i have found the most frustrating is speech clarity. i still find myself constantly saying "what?" but i just remind myself that before the BAHA, i probably wouldn't have heard them at all. my greatest fear was ignoring people and offending them when i didn't mean to, i simply couldn't hear them. now, i don't have to worry about that.

hope this helps! feel free to contact me if you have any questions bassplayer618@yahoo.com
~Jennifer Price