ANA Discussion Forum
General Category => Hearing Issues => Topic started by: claire1 on March 20, 2008, 10:00:15 pm
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Hi everyone
I was told by my neurosurgeon that I will loose the rest of my hearing in my left AN ear, which is 65% loss now, after the gamma knife radiosurgery. My hearing loss in my right ear is 35%.
My question is ,will I be able to hear if I have BAHA done? Does anyone have BAHA and what kind of hearing do you have now? ? Clearity, ? % of hearing???
Thanks
Claire a
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Claire -
I just had the BAHA surgery - won't get the processor for about 2 months - and my doc recommended it based on the fact that I have 100% hearing in my non-AN ear. So, if the hearing in your right ear was 100% the BAHA would definitely work for you. But since it's only 35% I'm thinking it might not.
I may be wrong though.
Jan
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Jan
I was thinking the same as you but was HOPING it would work. Not sure what to do now. I guess I'll discuss it with my ENT dr. I see him on Friday in Philidelphia. I do know a little signing but don't want to go down that route yet.
Thank You for replying.
Claire A.
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Claire -
yes, definitely discuss it with your doctor. I could be wrong since I don't know everything about the BAHA; I mostly know what pertains to my particular situation.
Best of luck and let me know how your consultation goes,
Jan
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Hi Claire,
It is certainly possible that you could lose hearing in your left ear after Gamma Knife, but I don't think that is for certain. There should be some chance that you would retain it. Don't count out that possibility just yet.
Jan, I think Claire meant that in her right ear she has lost 35% hearing, leaving her with 65% to work with. I'm not sure either, but I think that at a level above 50% is considered useful hearing, and a BAHA might still work.
So, look on the bright side for now. Anything can happen; you may want to wait and see what this "box of chocolates" has in store for you first.
Steve
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Jan, I think Claire meant that in her right ear she has lost 35% hearing, leaving her with 65% to work with. I'm not sure either, but I think that at a level above 50% is considered useful hearing, and a BAHA might still work.
Steve -
you are right. I just re-read Claire's first post and I got it backwards - it's 35% loss, not 35% retention. Thanks for correcting me; guess I should pay more attention when I'm responding to posts in the wee hours of the morning :)
As you point out, it's not certain that Claire would be SSD in her AN ear after GK. Being SSD is one of the "requirements" of the BAHA, so at this point it's a little premature say if a BAHA would help Claire or not.
Jan
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Claire, even if you're not a candidate for a BAHA, there are other options out there that your doctor should be able to tell you about. I'd definitely ask about them so you can make the right decision when the time comes.
I am pretty sure though, that 65% hearing in the "good" ear would be enough to be able to benefit from a BAHA, assuming you do lose 100% hearing in the bad ear.
Lori
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I want to thank you all for your input. It really does help being in this forum. My dr's appointment is this friday the 28th of march in philidelphia at the university of penn hospital and i have written out many questions for the dr. He'll be in on the gamma knife raiosurgery when i have it. no date has been set yet, but am hoping he'll be able to give me the timeline.
I cat be a "wait and watch" due to the many symptoms.
I'm a 59 year old transplant from Massachusetts and it's been a difficult transition from the new england area to pa. I miss my dr's. back home and when this came about with the AN, I've really felt alone without an anchor.(so to speak)
I've tried to find a psychologist to talk to but haven't been able to locate anyone with experience with brain tumors. I don't know where to look other than online and then I don't know the names of practices to ask for. It's been really tough. I wish i was back home where i was comfortable with the medical community. o! well. thanks for letting me vent as little.
Have a good day
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Claire -
I'm so glad you found this forum; we're here anytime you want to vent.
Good luck with the doctor's appt. on Friday; let us know what he says,
Jan
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Claire,
Besides all of our technical discussions of treatments and BAHAs, we are also here if you just want to vent, or have a conversation for that matter. We sometimes get chatting about all sorts of odd topics. :)
Can you call up one of your old doctors, just to touch base? They might not mind, and might be able to recommend someone in your area, or give you some direction, anyway.
How recently did you move from MA to PA?
Steve
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Hi Steve
I've been down here for a year from Chicopee,Massachusetts.(Just outside of Springfield,ma.) It's bigger than I had thought. My daughter lives here and after she graduated from upenn she and her husband decided to stay.
They started to have their family and I wanted to be here to be nearer my grand-"bambinos."
It's been wonderful until I was hit with this pile of bricks.(AN)
I just really need to focus on the reality and do all the homework I can to learn more about it and my options. I have to make the best out of a bad situation. I truely believe that for everything that happens there's a reason. I just have to find my rational reason for this. My daughter has always said that I was the most luckest unlucky person that she knows and that I have always been the most togethered. I guess It's about time I put that to the big test.
Thanks Steve. I've read many post and they have helped a great deal.
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I truly believe that for everything that happens there's a reason.
Claire -
I agree with this 100%. You will get through this. It's hard at times and stressful, but in the end everything will be fine.
Jan
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You will get through this. It's hard at times and stressful, but in the end everything will be fine.
Well, Jan, I agree with that 100%. :)
Claire, did you know that there is a local chapter of ANA in Philadelphia? If you get a chance, meeting other AN-ers in person is really worthwhile. There is something about sitting around face to face and talking that is really rewarding. Of course, everyone chooses seats to accommodate each other's good ears, and no one minds if you say "what" all the time, but is also good to hear each other stories. Even in a small group, it covers a wide range of experiences.
I can understand moving, now that you have mentioned the magic word "grandchildren." Here's hoping you continue to be the luckiest unlucky person around.
Steve
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Steve
Thanks for the info on the ANA groups in philli. I've been trying to get in touch with anyone who holds these metings. I'm calling today to see where and when there held.
Claire
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Hi,
Just thought I'd update you all on my DR's appointment today. Dr Ruckenstein is verryy learned in AN. He's out of the university of pa hospital in philidelphia. I'm scheulded for the GK in mid May. He's going to fit me for the baha but feels because of the unilatteral deafness, it may not be the right choice for me so he wants me test run it, so to speak, to see how the brain adapts to the sound from my good-bad ear. I also have a psychologist that i'll be seeing to keep me balanced(parden the pun)in the next couple of months. I called my old psych back home (thanks steve) and he's helping me find an experience psych that deals with brain tumors down here. Dr. Ruckenstein explained how the GK will work in detail and will arrang a time when I can go in and see the room that it will be done it so I don't get freaked out.(my terminology-not his)
So far so good (i think) one step at a time i guess.
Thanks for all concerned
Claire A
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Claire -
it looks like you are making definite progress in your AN journey; I'm glad things are coming together for you.
There is a BAHA demo that I found quite impressive - it's probably what your doctor means by a test run. It will give you some idea of what you can expect from the BAHA.
I think it's great that you will be seeing the room they do the GK in, prior to your procedure. I'm not sure if that's a routine practice, but IMO it should be; I think it's a great idea. Although I didn't get a preview of the OR room where I had my surgery, I did have to go in for pre op tests, which gave me some familiarity with the hospital. It made me feel more comfortable there.
Jan
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Hey, Claire,
I am so glad to hear you are getting some where! Dr. Ruckenstein sounds sensible to me; I think giving a tour of the GK facility makes a lot of sense. There are several people on this forum who have described the experience in detail; Sue and Dana come to mind. It will not be an ordinary week for you, but I have been through a dental procedure that took longer. ;D
I am also glad to hear you got a hold of your old psych, and are finding a new one in town. I hope that works out well, it could help a lot in the next few months. And as Jan will happily explain, I am very jealous that you get to try out a BAHA. I have to settle for an ordinary hearing aid.
Can I interest you in a knitted cap? :D
Steve
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Can I interest you in a knitted cap? :D
Steve
Hey, wait a minute! Would Claire have to shave her head also ??? Or was that deal just for Lori & me ???
Jan
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;) Hi
LOL Steve, if your offering to knit a scull cap I like mint green. lolol You might as well go into bussiness knitting them..
The dr's office called today,Saturday, to set up an oncologist appointment and the GK surgery. ALL of the calmness faded away BUT now I have someone to dump on when the willies come back to haunt me. That good.
Hey If we all set a date to wear our caps we may start a new trend.lol
Have a great day.
Claire
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Hi Claire-
Glad you are on the road to treatment - and that you are also on the road to finding a good therapist. If you former psych in Mass isn't able to refer you, you shouldn't hesitate to ask Dr. R for a referral. I have to think that docs who specialiize in brain boogers would also know psychs who specialize in them...
Good luck!
Deb - counting down in NJ
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Debbi
Yhanks,You know I never thought of that.I guess I've been pre-occupied with have to have all my ducks in a row ,I forgot about row1. lol
Thanks again
Claire