Author Topic: To BAHA or not  (Read 6247 times)

katmac36

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To BAHA or not
« on: March 19, 2012, 02:43:16 pm »
Hi everyone! I have been absent from the site for a while since my surgery. I have been getting used to my new "normal". I had my Translab 6 months ago and it went wonderfully. Apparently my tumor had caused enough damage that severing the vestibular nerve was not as horrible as they expected. My recovery has gone well. I still deal with headaches and bad days. I work night shift so it is especially bad after working. My biggest issue is dealing with the hearing loss. That has been more frustrating than I expected. I had already lost so much before the surgery that I didn't think it would be a huge deal. I was wrong. I can't even watch a movie without getting frustrated. I end up turning on closed captioning. I find myself asking people to repeat themselves constantly, especially when there is noise in the background. I am considering getting a BAHA. Has anyone else here gotten one? Is it worth it? An ENT that I know through work highly recommends me getting one. He thinks it will help me tremendously. I just don't want to go through another surgery unless I know it is really and truly going to be helpful. Thanks everyone!!

Tod

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Re: To BAHA or not
« Reply #1 on: March 19, 2012, 03:24:22 pm »
Hey, I love my BAHA (Ponto Pro). However, it is because it makes meetings and small groups better - much better. Unfortunately, it doesn't help every situation. Loud, chaotic places, for me, aren't any better with it than without it.  It also doesn't really help with whispers either.

For awhile I use closed captioning post-surgery and then eventually adjusted...especially once the grandelves and their parents moved out of the house. Much quieter then.

The surgery was a breeze for me, and I had no real difficulties other than a bad headache two days later. I have also had no issues with my implant or the skin around it. Some folks have had difficulty.

Will it truly be helpful? I certainly can't tell you that. I can suggest you talk with your ENT and see if you can try a BAHA with the head clamp (for want of a better term and I can't remember what it is...I have a brain tumor, sorry :) ). When I tried one on, I was sold.

To be fair, not everyone has found them helpful, or have had a good experience. It seems though that the majority of folks on this site have had a good experience.

I hope this is helpful.

-tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

jaylogs

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Re: To BAHA or not
« Reply #2 on: March 19, 2012, 03:26:07 pm »
Hello katmac, welcome back to the forum!! Glad to hear your recovery is going well... Even with the headaches and bad days, it sounds like you are about on par with what one would call a "Normal" recovery post op.  I can symphasize with you on the night shift thing...I work nights as well, and it's probably been one of the reasons why it took longer to get my mojo back than it could have. As far as your BAHA question, you will find a lot of people on here have them...myself included.  Although I have some hearing in that ear, it was mainly gobbled up mess that was getting to my brain instead of normal hearing. So I find a BAHA VERY helpful.  Of course, that's my own experience, everyone has different experiences with these things. If you search this forum under the "Hearing Issues" section of where I moved this topic, you'll start to see a wide array of opinions about BAHA's...mostly positive. Again, it all depends on the person.  I had a lot of issues with my BAHA surgery (PM me if you wish, I will send you a link to the thread all about it here on this forum), but even with all that I went through, I am very glad I got it.  Some ENT's have demo models of these BAHA's that simulate a real BAHA. Ask your ENT if they have one you can try out. It is almost near real-BAHA quality, but it will give you an idea on how much a difference it will make.  Good luck as you futher consider your options and hang in there! :)
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

CHD63

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Re: To BAHA or not
« Reply #3 on: March 19, 2012, 04:32:33 pm »
Add me to the list of those who love their BAHA (Ponto Pro for me, as well).  It makes a tremendous difference in most situations, but especially in small groups or hearing my husband in the car (a real pain to hear during the three months between surgery and the processor being attached).

I had to laugh at Tod's whisper comment.  My son was sitting on my deaf side during church a while back and kept trying to whisper in my ear at various points in the service ..... of course I could not hear him.  Finally I said "Whisper directly into my Ponto and see if I can hear it."  Lo, and behold, it came through very clearly.

Keep in mind that the demo will not sound exactly the same as the real thing, but it will give you an idea.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Archer

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Re: To BAHA or not
« Reply #4 on: March 21, 2012, 07:13:58 am »
I don't have a BAHA yet.  I did however do the demo headband trial at HEI a few weeks ago.  It was amazing to hear sound coming from my deaf side.  It took me a total of 2 seconds to tell the specialist to sign me up.  If insurance pays for it I'll have the "stud" (can't remember what it is really called) place at the end of April.  If insurance doesn't come across to pay for it, I'll get a soundbite out of pocket.  I understand they are cheaper.  In any case I'll be able to hear what my wife says to me in the car again.  That is a good thing,,,,,,,most of the time.   ;)

katmac36

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Re: To BAHA or not
« Reply #5 on: March 21, 2012, 12:53:37 pm »
Thanks for all of the advice. It is making want one more and more. Archer, What type of insurance do you have? I have Cigna. Let me  know if you have any issues with insurance paying for it. That is another concern of mine. Do you live in L. A. ? I was wondering if it is something I need to go there for or not since I had surgery with them and now trust them implicitly. I am sure plenty of docs around here do them. I was told by an ENT that I work with that there is a new type of BAHA out that does not come through the skin which decreases the issues of keeping it dry. I am going to check into it. Thanks!!

Archer

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Re: To BAHA or not
« Reply #6 on: March 21, 2012, 01:40:35 pm »
I have BCBS.  I don't live in LA but have family there so it makes it easier to travel from Midwest to LA.  I understand that HEI actually gives my info to Oticon (Ponto Pro manufacturer) and they deal with Blue Cross in order to get approval.  I hope it works out.  I was amazed during the short trial I had.  I'll post the outcome once I know something.

CHD63

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Re: To BAHA or not
« Reply #7 on: March 21, 2012, 07:20:36 pm »
Katie .....

If your ENT was talking about the Sophono hearing device, you need to be aware that is uses magnets both under and on top of the skin.  Therefore, to my knowledge, MRIs would not be possible after implantation of the magnets used.  Those of us with ANs and having the need for regular follow up MRIs for a period of time, it presents a problem.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

jaylogs

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Re: To BAHA or not
« Reply #8 on: March 22, 2012, 01:17:38 am »
Katie, I have CIGNA and had no issues with it. In fact, I had to do it twice because of issues with the skin healing, and they didn't balk!  But then, that's through my work, so not sure if its different plans with CIGNA or not...
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

leapyrtwins

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Re: To BAHA or not
« Reply #9 on: March 22, 2012, 08:23:04 pm »
DEFINITELY worth it.

One of THE best things I ever did.

IMO, everyone who is SSD should at least seriously consider a BAHA.

Clarice is correct, the Sophono uses magnets (similar to a CI - cochlear implant) and if you have one you cannot have MRIs of your head anymore.

My neurotologist - did both my AN and BAHA surgeries - tells me that the BAHA has superior sound quality; the Sophono can't compare.

As for insurance - both Cochlear and Oticon have insurance divisions that help BAHA candidates get coverage from their insurance company.  They are pros @ this - don't hesitate to contact them for help.

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

leapyrtwins

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Re: To BAHA or not
« Reply #10 on: March 23, 2012, 01:35:58 pm »
I was wondering if it is something I need to go there for or not since I had surgery with them and now trust them implicitly.

It's not necessary to have BAHA surgery with the same doctors that did your AN surgery.  If it works for you and that's what you want, great - but if not there are lots of docs who do BAHA implants.  Kris, one of our fellow Forumites, had her AN surgery @ HEI but had her BAHA implant done by my doc because she lives in Wisconsin (I'm in Illinois). 

While you want someone who has done BAHA implant surgery before, it's not like AN surgery where a doc with lots and lots of experience is key.   You probably don't want to be a doc's first patient, but you don't need to be their 2,007th either.  Cochlear's website (www.cochlearamericas.com) has a section - I believe it's titled "Find a Clinic" - that will show you docs in your area that do BAHA implants.

BAHA surgery is absolutely nothing like AN surgery.  My AN surgery was 7 1/2 hours under general anesthesia and required a hospital stay of several days.  My BAHA surgery was about 90 minutes from start to finish and a good deal of that time was spent by the nurses draping me and getting me ready for the surgery.  I had the surgery with local anesthesia while wide awake - didn't feel a thing and walked out of the hospital about 15 minutes after the procedure ended.

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

leeclinton

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Re: To BAHA or not
« Reply #11 on: March 23, 2012, 07:23:37 pm »
I was considering BAHA myself, but instead of jumping into another surgery, I spoke with my audiologist and she is coordinating a 90-day  free trial of the Phonak CROS hearing aid.  This option is especially attractive to me because it's non-surgical, I can take them on and off throughout the day, and I figure that I will know if they are worth purchasing after 90-days.

This may be another option to consider.

I have not received them yet, but after I do I will update the group on my experience.

Lee
3.3 cm AN removal Jan. 2012