BAHA appt - what questions should I ask?

[cecile k]

I have an appointment with a specialist re the BAHA/other hearing devices. I am SSD after AN surgery nearly 8 years ago. On the one hand, I find it frustrating to have SSD and on the other hand I'm a bit scared of going for BAHA surgery because of headache issues since AN surgery.  I would love to hear from those who have been in similar circumstances - what questions should I be asking the specialist besides the obvious :-)?

Thanks a bunch.

Cecile
...from BC, Canada

[leapyrtwins]

Cecile -

I've had my BAHA for a little over a year now - surgery was in 3/08 and I got to start wearing my Divino in 6/08    I love my BAHA and don't have any issues with it whatsoever.

I was SSD for 9 months (from retrosigmoid surgery) before my implant and I found it HIGHLY frustrating! 

I don't really have any doctor questions to suggest to you, but I found that asking questions of my fellow forumites who had BAHAs before me was extremely helpful.  So, if there is anything you'd like to know, please feel free to ask me.  I'll be glad to answer anything I can.  If you have questions you'd rather not ask on the open forum, please don't hesitate to send me a PM.

Best,

Jan

[wendysig]

Hi Cecile,

Like Jan, I didn't have any issues with headaches before my BAHA surgery and have had none since.  I also love my Divino-- I had my surgery, which was a piece of cake, especially compared to AN surgery, on January 5 and have had my BAHA since April 3.  While it's not quite the same as natural hearing, it is a HUGE improvement over being SSD.  My surgery was done under local anesthetic with sedation, but I was awake and alert for the most part during the surgery, which I think took about two  hours.  Afterwards, I went to recovery for a short time, had some Jello and orange juice and then went out for lunch adn then home with my husband.   I would do it again in a hearbeat.

Best wishes,
Wendy

[cecile k]

Hi Jan and Wendy:

Thanks for your replies. Jan, did you have any major headache issues after your AN surgery? Any tinnitus?

I am leaning not to have the BAHA surgery - years and years of headaches after my AN surgery which are now more or less under control. I just am freaked out about having someone drill into my skull and perhaps restart the headache trauma.

Cecile

[JerseyGirl2]

Hi, Cecile,

I wear a BAHA and am quite happy with it. Like Jan and Wendy, I also had no headache issues either before or after my AN/BAHA surgery (I had mine done at the same time). I have mild tinnitus (and had it prior to AN surgery) -- the BAHA has no effect whatsoever on my tinnitus; it neither amplifies it nor suppresses it.

Could you arrange to test a BAHA before making your final decision (many audiologists have demo BAHAs with headbands -- doesn't give you the full effect, but at least gives you an idea of what a BAHA can do for you)? You mention that you've been SSD for eight years -- maybe you've adapted pretty well without a BAHA. Lots of people do.

If the thought of additional surgery freaks you out, you can always consider the Transear -- quite a few posters on this forum are very happy with those devices.

Best wishes as you reach your decision.

Catherine (Jersey Girl 2)

[leapyrtwins]

Cecile -

no, I had no headaches - major or otherwise - either before or after my AN surgery.  None after my BAHA surgery either.  Same goes for tinnitus - thankfully I've never suffered from it.

Catherine has some great suggestions.  You should look into the BAHA demo - I only tried the demo briefly in my doc's office and I was sold right then and there - but from what others on the forum say, lots of docs let you take one home to try it out so you can have a few days with it.  The TransEar is also a very good option and lots of people are very happy with it.  The BAHA is wonderful, but it isn't for everyone.

Jan

[keithb]

Cecile,
I have had SSD for the past 12 years following my AN surgeries in 1997.  I was very skeptical at first about the BAHA.  I figured I had adapted to SSD, so why not continue to adapt.  Last week I had an opportunity to try a BAHA demo.  Within 30 seconds, I knew I would be scheduling my surgery.  The audiologist kneeled beside me and whispered "Can you hear me?" on the side of my head which had not given me any sound for over a decade.  I actually heard her say it, and a tear came to my eye.  My surgery is scheduled for Oct. 14.  I can't wait.  My advice would be to try the demo.  I'll let you know what it is like after the surgery.

Take care,
KeithB
Gettysburg, PA

[leapyrtwins]

Keith - I can only imagine having the BAHA demo after 12 years of being SSD - it must have been amazing! 

I demo'd it about 4 months after my AN surgery left me SSD and I was blown away by it - couldn't wait for the surgery!

Cecile - when is your appointment?

Jan

[creekview]

Hello,
In May of 2006 surgery to remove acoustic neuroma left me deaf on the right side. I had the BAHA implant July 2007.  In Jan 2009 I began to noticy a very runny nose that didn't stop.  After my yearly MRI  in May it showed massive fluid in the mastoid air cells.  Went back to the neuro and surgery  3 weeks ago to repair a CSF leak (another major surgery).  The neuro believed it was caused from the BAHA implant.  Of course the ENT whom did the BAHA does not agree in my heart of hearts I know that is what caused the leak.  Following 5 hours of surgery for the CSF leak I am still leaking and hoping that scar tissue will close what leak is left.  If you work in an office the BAHA does not work if there is alot of background noise and you are on the phone.  You will need to turn the BAHA off if that is the case.  I have had 2 neurosurgeons tell me that the BAHA isn't the best  thing to have done.  I would definately reconsider if I knew then what I know now.  Best of luck and feel free to email me with any other questions.

[leapyrtwins]

Creekview -

I'm sorry to hear about your troubles with the BAHA, but want to assure you and others that your case is unique.  My neurosurgeon thought a BAHA was a great idea for me and when I told him that my neurotologist had done my surgery, he was thrilled for me.

Once in a while someone has big issues with a BAHA implant that doesn't heal correctly or has numerous infections, but that is unique also.

The majority of BAHA recipients don't experience problems and are quite happy with their implant. 

I work in an office and have found my Divino extremely helpful in this setting.  It does have it's faults - doesn't work well in a large and/or noisy room - but the new technology (BP100) has made great strides to rectify that.  The BAHA will not give anyone back their normal hearing; nothing on the market today will do that.  It does have it's drawbacks, but in my opinion, the advantages greatly outweigh them.

I hope you heal quickly from your CSF leak surgery.

Best,

Jan

[tichinose]

I agree with you on being afraid to go back into that operating room and a drill in my head.  YUK!  Can't you be asleep?

[leapyrtwins]

tichinose -

most docs do the BAHA implant under general and local anesthesia - the patient usually has the choice.  I chose local, but that doesn't mean everyone else should choose local.  Interestingly enough though, over 90% of my doc's patients choose local.

The surgery is usually done on an outpatient basis (I say usually because Jo will be spending time in the hospital for her BAHA surgery; they do things a little differently in Canada) and it's fairly minor.  The drill isn't bad at all - just like being at the dentist to have a cavity filled; you don't feel a thing but pressure.  You can hear the noise, but there is no pain.

I wasn't sure I wanted another surgery after my retrosigmoid, but BAHA surgery is absolutely NOTHING like AN surgery - thankfully    Nice, short surgery; nice short recovery!

Jan

[cecile k]

I just want to thank all of you for being so honest about your experiences, good or otherwise. I have made the decision not to go ahead with the surgery. The fact that I have had to suffer extreme headaches for years (yes, so extreme that if I had a gun I would have shot myself -  to put it bluntly) just scares me to having someone drill into my skull again. I know that if there would be no turning back if headaches would come back with a vengeance because of the BAHA surgery. I have resigned myself to being just thankful that I can hear very well on the one side (my five boys say that they can't get away with anything :-)

All the best to each one of you!

Cecile

[sgerrard]

Nothing wrong with that, Cecile. Some people get used to SSD and do fine with it - moderator Jim is one of them. I'm just glad you have made progress with your headache issue. If you are keeping 5 boys in line, you are doing well.

Steve

[Jim Scott]

Cecile ~

You've made a logical decision that works for you and that we can all support .  Trust me, SSD can be handled.  In your case, the very real fear of the implant surgery regenerating excruciating headaches that render you near-suicidal is ample reason to choose not to obtain a BAHA.  I had a great surgery outcome (no headaches) and don't wish to tempt fate, plus, I function just fine being SSD. My 'good' ear works very well, just as yours does.  I believe that motivation can be a powerful tool when adapting to a physical loss.  I trust you'll be O.K. and adapt to your SSD as I have.   

Jim