ANA Discussion Forum
General Category => Hearing Issues => Topic started by: lori67 on June 04, 2008, 08:44:44 am
-
Jan - congratulations on BAHA-gotcha day!
I know you'll love it and you'll quickly learn to turn it off when the kids ask you for something expensive. ;D
Enjoy and take some time to listen to the birds sing today!
Lori
-
Lori~
I bet Jan is out listening to the birdies and all the other wonderful noises NOW so that when she goes home she can pretend to be deaf again so she doesn't have to listen to her kids fight...maybe hers don't do that...
K
-
This is the 2nd time I'm going to attempt to post. I had a response all written, but pushed the wrong key and deleted it - I HATE when that happens!!! Obviously my processor hasn't made me any smarter :D
Before I start my play-by-play, let me state for the record that my kids fight all the time. I find that with twins, they are either totally co-dependent or compete constantly (as in, "mom likes me best") and as mine grow older, they definitely fall into the latter category ::)
I did take time today to listen to the birds, a water fountain, and several airplanes. I got out of the doc's earlier than I expected and had time to kill, so I enjoyed the sounds and the nice warm sun in the outside grotto. It sounds very hokey, but I felt like a whole new woman - I don't know if it was the processor or the fact that I wasn't hearing anyone fighting or asking for money. Peace and quiet are hard to come by ;)
I think I am going to like the BAHA very much and it will be as amazing as I anticipated. But there are a couple of things I have to get used to. #1) putting the device on the abutment. It's very easy to pop off, but being right handed and putting a tiny little box onto a screw on the left side of my head by feel alone is going to take some practice; #2) hearing the sound of my own voice every time I speak because it's now broadcast over an itsy-bitsy microphone. I've flipped the little switch for directionality, but at this point I can hear no difference in how loud I hear my own voice.
Now for details of the "gift pack" - sadly there is no Dawn, but it's actually very impressive:
a lovely oval black covered box to store my processor in when not in use;
a 6-pack of #13 "orange" batteries;
a brown abutment cap (to match my hair and my processor);
a safety - which is basically a fishing wire attached to a collar clip so I don't lose my processor when riding roller coasters or engaging in extreme physical activity - apparently the folks at Cochlear have very high hopes for me ;)
a really soft blue toothbrush (you were right shygirl) with Cochlear printed on it;
a small jar of "Mini Super Dri-Aid" to take the moisture & condensation out of the processor - when the little beads get old, you can reactivate them in the oven or the microwave ;D
a little credit card that explains to airport personnel what is implanted into my head (in case the metal detectors go off);
and last, but not least, a hard plastic "thingy" so that others can experience how the BAHA works. They can plug their ears and have someone hold the "thingy" to the bone behind their ear to get the full effect of the BAHA. The audiologist said you can also cover the "thingy" with the fingertip of a latex glove and have someone place it between their teeth (instead of on their hearing bone) and they can experience the same thing.
I also got an instruction manual with instructions written in about 17 different languages; literature about an extended warranty; and a catalog with "accessories" like Ipod adaptors that can be ordered at an additional price.
Although the doc and the audiologist told me a few months ago that they thought the price was "about $2,500" the audiologist told me today it's $3,750. I'm interested to see how much my insurance will want me to pay. Regardless of the price, I think it will be well worth it.
BAHA Jan
-
Jan~
SOOOOOOOOOOOOO excited for you - might even have to try it for myself. However, I have had quite enough surgery for this year!!
K *glad I don't have the only fighting children*
-
Kaybo -
I totally understand your wanting to take a surgical break and I don't blame you at all :)
I, myself, hope to be done for at least a few years!
Jan
-
Hi again Jan --
I'm glad to hear you like your BAHA so much so far! From what I've read about it, it sounds like something I must have if I end up SSD, which now seems even more likely. Your post made me laugh so hard I almost fell out of my chair! My younger daughter was sitting on the couch yelling "What's so funny?" When I finished reading, I had her read it too and she laughed almost as much as me -- especially at the part about Cochlear having high hopes for you. Lori is right though you'll have to learn to turn it off quickly when the kids start asking for expensive things and money. Then you can act very innocent and say you didn't hear them. Anyway, I am so happy for you. I hope you really enjoy your new accessory.
Wendy
-
Hey, I didn't get the little credit card thing to explain what's sticking out of my head!! I will tell you that the abuttment and the processor do not set off the metal detectors at the airports anyway. And I don't seem to get any better radio reception either... :-\
I'm glad you like your processor so far. It gets easier to put on the more you do it. At least mine is on the right and I'm right handed, but since I don't have a lot of feeling on that side of my head, I need to use 2 hands anyway - the left one to feel for the abuttment and the right one to snap it on.
I haven't priced the optional MP3/Ipod attachments yet, but of course my husband thinks that would be cool to have, so I may have to find out the price so he will realize that it's not THAT cool - I'm sure they aren't cheap.
And I'm sure those twins of yours are complete angels who never disagree or talk back. I know my kids are. HA HA HA....sorry, I slipped off into dream land for a moment - I snapped back quickly when I heard them having a fierce tug-of-war over a Barbie... like we only have one????? ::)
Looking forward to hearing some funny BAHA stories from you in the future Jan! I know I've had my share!
Lori
-
You know the credit card kind of surprised me too. We're often talked on the forum about the fact that titanium plates, mesh, and fixtures don't set off metal detectors, yet here's a card directly from Cochlear. Makes me wonder if maybe they aren't anticipating more intense screening at airports or something ??? The card is actually cool - I'll show you mine at the symposium or if we meet up in NJ. It's got two pictures on one side - one of someone's head that shows the abutment without the processor and one with the processor attached. It's very nicely done - in color; mostly yellow and red. Pretty eye catching ;) It says something about the abutment being "non-removable". The other side is just a written explanation I think.
The processor actually reminds me of a radio attached to my head - but it doesn't play music.
I'm hoping I get better at attaching it fast, since I don't have 10 minutes to play with it every morning ::) I'm attaching it just the opposite of you - right hand feeling for the abutment, left hand "rocking" the processor on. Although it doesn't hurt to attach it, I find myself hesitant to really push it to get it on - which I know is necessary.
I'd imagine the adaptors aren't cheap, but you never know. I'll most likely stick to my Ipod mono-adaptor and single ear plug from RadioShack - very cheap ;D
-
Thank you, Jan! :)
I am so glad you told me to come here to read about it. Your explanation was very good and I too laughed. Then I laughed again visualizing the airport security telling you to take the abutment out. YIKES! I hadn't thought about hearing your own voice, but now that I know about it, that makes sense. I am sure you will get used to it. Plus that I am sure you never need to fuss at the kids!
Where are the pictures?
My bad hearing has worsened since my ONE only CK on Monday. I feel almost certain I will be looking into the Baha! Your info is invaluable!
Mary
-
You are welcome, Mary. Someone called me an "information junkie" yesterday (I think it was Debbi) and I'm liking that description much more than "control freak" :D
If you haven't seen the pictures yet, you will find them under Hearing Issues - topic is "Jan's BAHA pictures". Enjoy :D
BAHA Benjamin
-
Hi Jan -
I loved your description of your first day with your BAHA. In fact, I enjoyed it so much that I had to give it another read. Just thinking about it before made me laugh. Glad you seem to be enjoying it so much. I now know that I will be needing one of these things, so getting all the information I can is something I look forward to. Nothing wrong with being an "information junkie." And you're right, it does sound better than "control freak."
Wendy
-
It appears the cochlearamerica online store sells the audio adapter to listen to your iPod for $236.00. Has anyone ever used one...and do you like it?
Jan...so happy to hear you finally got your processor and like it. I plan to join the ranks of BAHA users this fall. I'm stocking up on my Dawn dishwashing liquid now ;)
-
oHIo -
haven't had a chance to view the Cochlear online store, but the adaptor sounds a little pricey for me. I don't recall the exact price of my iPod, but I think it only cost me $250 or $300. I purchased a mono adaptor from RadioShack and a single ear plug almost a year ago because others on the forum recommended it and IMO they work wonderfully. The total cost of both items was less than $10.
I'm glad to hear you are planning to join us BAHA users this fall. It seems like a lot of forumites are moving in this direction. Like I told my doc just yesterday, I'm thinking I should purchase some Cochlear stock ;) Perhaps I should also invest in Proctor & Gamble :D
Jan
-
Jan..since P&G is the big local employer here, maybe they could cut me a deal with the Dawn for our BAHA kits ;)
I also thought the audio adapter was a bit on the pricey side, considering it was almost as much as an iPod. My hearing in my 'good' ear is so sensitive now, I have pretty much given up listening to music and I keep the tv low with the closed captioning on.
I'll ask my audiologist if anyone ever gets the adapter and what benefits they have gained. Maybe there is something they know that we don't with the price tag. I do know she mentioned the Divino had a few more features than the Intenso (directional microphone, ability to hook up other devices, etc.). I'm not sure how important all that stuff really is, but I guess it would be nice to have the capabilities, just in case.
If I have to wait three months to hook on my processor (I was told 3-6 months depending on healing time) it will be just in time for Christmas. I get excited just thinking about it.
-
Wow, that's a little out of my budget too. I guess I'll just have to sing and let everyone around me spend the money on noise-cancelling headphones instead.
Lori
-
I found out I have an AN on 5/23. That didn't surprise me. What did surprise me was the ENT repeating more than once, the hearing will go without backing that up with information about devices that could help like the BAHA. Is that normal for an ENT? I asked about hearing aids and he said they wouldn't help.
Right now, I have good hearing in the left AN hear but it's just not as good as the right ear. Tomorrow, I'm going for a second MRI and a temperal bone scan at the Massachusetts Ear and Eye Infirmary. Tuesday is a consultation with a neurosurgeon. I'm hesistant about surgery. I'm hoping radiation will work for me.
I'll keep you posted...
-
Hi Lholl...
I hope that you have the option for radiation too. It's always nice to have choices.
I'm a little surprised that your doctor didn't mention that there were also options if you lose hearing in your AN ear, but maybe he figures since he'll be meeting with you again if he does do the surgery that he'd discuss that with you at that point. Maybe he didn't want to throw too much information at you at one time.
Lots of us here have BAHA, TransEar, etc... so I'm sure you can get a lot of information here that you can ask your doctor more about. And there are also many that don't feel the need for any sort of hearing aid and get along just fine with hearing on one side.
Good luck with your MRI and your consults. I've heard Mass Ear and Eye is a great place.
Lori
-
Hi and welcome Lholl -
I am not surprised that your ENT didn't know about the BAHA. IMO you are lucky that your ENT knew about ANs - some really don't.
My ENT was the one who ordered my diagnostic MRI - he thankfully knew enough to do that - but once it was obvious that I had a "growth" he immediately referred me to my neurotologist. I had the occasion to see my ENT after my AN surgery and mentioned I was getting a BAHA and he had absolutely no idea what I was talking about. I had to explain it to him. Lots of other medical people I know have no idea what a BAHA is either, but I would have thought that since the "E" stands for ear the ENT wouldn't be one of them :o
How large is your AN? Your post doesn't say, but I'm assuming it's in the small to medium range if you are contemplating radiation. If you haven't already, you should contact the ANA about some informational brochures; they contain some very valuable information.
In order to use a BAHA - or a Transear (I think) - you have to be completely deaf in your AN ear. So if your AN treatment leaves you with some hearing, you wouldn't be a BAHA candidate.
Good luck with your MRI and your consultation. And, yes, please keep us posted.
Jan
-
Hey, Lori -
did you catch that? oHIo has a P&G connection! I'm thinking the time is right to quit our day jobs and get serious about some of these great AN marketing ideas ;)
I am a little concerned though about all the people we are going to have to share a cut of our profits with. Let's see, there's K, Wendy, and oHIo for sure. And if I recall (hard for me to do since I'm so much older than you) LA David, Debbi and Anne Marie ? Who am I missing? I thought possibly Steve, but he'll probably go out on his own with that very lucrative hat job he has. But if our ventures are really successful, we'll be able to purchase a share of his business.
oHIo -
stopped listening to music? :o That is SO sad :( Music and humor are the two basic necessities in my life - sometimes I'd even give up food and water for them. I hardly watch TV since I used to only basically watch the news and I get that on CNN.com or MSN.com. If you have an iPod, I highly recommend the mono adaptor and single ear plug. I purchased mine at RadioShack, but others have mentioned finding them at Amazon.com and Best Buy.
The mono adaptor converts the stereo sounds that you'd normally hear with two ears into one ear and it's very similar to hearing in stereo. Notice I didn't say it's the same, but it is very similar. Kind of like the BAHA - it isn't the same as hearing, but it's an improvement over SSD.
I also have a car adaptor for my iPod which cost me about $40 at JC Penneys. I play my iPod in the car all the time (when the kids will let me) and I find that it has normal stereo sounds.
As for the Intenso vs the Divino, all I know is that the Intenso is more powerful. I currently have the Divino, but somewhere down the road when I get really ancient (stop laughing and saying that will be real soon, Lori) I may have to get an Intenso.
Jan
-
The ENT didn't tell me how big the AN is. It was the first time he had seen it. The people who did the MRI actually called the MRI normal. They missed the AN. So, the ENT preached to all of the other doctors in the room with us, "Always read your own scans."
It didn't appear to be more than 2 cm to me. I will ask about the size the next chance I get.
It would have made me feel better, when telling me for a fact that the hearing will go, if the ENT could have told me about options like the BAHA but he couldn't or wouldn't. He actually said the hearing was important as compared to saving the facial nerves. I understand it's not as important but it is still important if it is possible to save any hearing.
Thank you for your support. You guys are better than doctors. I'm glad I found this site...
-
Jan~
I must have missed something (surprise there)...what is Divino(the first time I typed division ;D - I do know what that is!!) and Intenso??
K
-
Jan don't forget Brendalu and myself we are doing the crafty project for the compression stockings. We do not have to share because there are so many good ideas that we will have many different ways to go. I believe Steve needs to give up some of his hat profits for the group. Then we can rent the entire houseboat fleet and show the Lake Roosevelt young 20's how it is to really party all night long! We will go to Costco for the 500 count ibuprofen, asprin and tylenol it will take us to get going the next day. I think it is an a valuable lesson for the younger ones to learn how to run from the police in our 60 ft boat and what to do while you are in jail on your vacation. Sounds like a fun time doesn't it. ;) 16
-
16 -
sign me up, I'm there! I haven't had to run from the police since college when we used to get into the bars before we were legal and then get caught in a raid :o Wait a minute! Did I just confess to underage drinking - don't tell my kids!
I knew that Lori and I had many others involved in all these great ideas, but due to my age (Lori is younger than I am, you know) I couldn't remember everyone :P
K -
Divino and Intenso refer to names of BAHA processors. There are two different "strengths" so to speak. The Divino is a little less powerful than the Intenso. I currently have the Divino since I have 100% hearing in my "good" ear. I asked my doc what my options will be in about 20 years or so when I will possibly have less than 100% in my good ear. He said at that time I could either replace my Divino with an Intenso or I could keep the Divino and get a conventional hearing aid for my "good" ear.
Jan
-
Thank you for your support. You guys are better than doctors.
And we get paid a whole lot less ;D
-
Yes Jan, P&G is a major employer here in Cincinnati. I have multiple friends who work for them, but unfortunately, I don't own stock (yet) ;) We could figure out which toothbrush brand is softer, since P&G markets both Crest and Oral B products and include them in our kits. :) They also make batteries.
For now, yes, I have given up listening to my music. I hate it, but my hearing is so sensitive on my hearing side, I can hardly stand any loud noise or talking. Driving takes every ounce of concentration I have, since I am functioning with only one eye (still). I wonder if my senses are heightened because I went from 100% hearing in my right ear to none, along with having my eye sewn shut. My sense of smell is really heightened, which is good and bad. Everything tastes like metal, but is sure smells good.
I'm waiting to see what Steve's hats look like before I ask for one. ;)
-
I'd make some kind of wisecrack here but I'm discombobulated because I took, now what did I take? I took some pink pill to stop my hand from itching and swelling. I'm glad I squished that mosquito! I stilll can remember what I took and its all the mosquito's fault!!! It didn't stop the itching, but apparently I now have brain damage. I can't remember the name of the pill I took. It's pink and stops itching, runny noses, scratchy throats and something else I can't remember. Do any of you know what I'm talking about?
Wendy
-
Wendy~
Benadryl maybe?? Hey, if it damaged your brain maybe it damamged the AN & now you won't have to have surgery!!! ;D
K
-
You're cracking me up here K ;D
From Wendy's description, I'd vote Benadryl also.
oHIo -
sounds like P&G would be a great company to help us in our AN product development ventures. Let's get Lori right on this - if she's out of the plastic kiddie pool, that is ;)
I'm sorry to hear your ear is so sensitive and that your eye is still an issue. I haven't had either of those problems, but I do know the metallic taste issue quite well. Mine went away in time; I'm hoping yours does too.
BTW, we are all waiting to see what Steve's hats look like. I, myself, am doubtful that he even knows how to knit. But I'm not criticizing him, because I certainly don't know how either ::)
Jan
-
wendysig ,
I'm with Kaybo, it sounds like Benadryl
You sound like me. I was cooking breakfast for my family this morning and I told my husband there was enough of four people. My husband said no we have five in the house. For some reason my brain was seeing four,I argued with him, so I called out there names to my husband but I was still seeing four. He was right I was wrong but stubborn me I keep insisting there was four. I do stupid things like that very often. I tell him so often I can not help my brain doesn't work right.
eve
-
I'm waiting to see what Steve's hats look like before I ask for one. ;)
BTW, we are all waiting to see what Steve's hats look like. I, myself, am doubtful that he even knows how to knit.
Oh yee of little faith, I am crushed! :(
(unless they are knitted by the band of kids K is bringing to Chicago, in which case yee are wise to wait)
Steve
-
Oh yee of little faith, I am crushed! :(
Sorry, Steve. Reality can be hard to face sometimes :'(
I didn't think you'd find this comment - at least not so soon - but then again, you always seem to ;)
-
Hey Steve I have an idea for your hats since it is summer and I am running a fever maybe you could make little pouches somehow so we can put ice cubes in our hats. What do you think? Maybe that is above your skill level. 8)
Isn't it against the law to hire small children for your hat enterprize? Just looking out for your reputation since you are now so high up in the chain of command. No need to thank me I'm here to help in anyway I can. :D
16
-
16-
The ice cubes are a great idea...there are a few women here who may find them useful for going through "the change"....good thing I'm only 29! :D
And it's nice of you to look out for Steve...we wouldn't want him to lose all that money he's making now and not be able to buy us drinks...
Lori
-
The ice cubes are a good idea - especially for those women older than Lori - but the hats are supposed to be knit - with yarn.
Probably wouldn't be a good idea to wear them in the summer heat - with or without ice cubes. Unless you want your BAHA to overheat, that is ;)
-
Would knit sun-visors be too hard for Steve to make?
Or maybe we could wear those pith helmets - like jungle explorers used to wear (at least in cartoons) - with a built in fan to keep our heads and BAHA cool and Steve could knit helmet coozies. Or are they cozies... ???
Lori
-
Lori~
WOW! We are the same age - Kendie put that I was 29 on her Mother's Day thing in Pre-K. I've aged a LOT in the last year, though, b/c LAST year Emee put that I was 16!! I guess this surgery was rougher on my than we all thought!!
K
-
Jan, K and Eve,
You were all right -- it was Benedryl. That stuff always makes me feel like a spacecadet and then of course, there was the swelling and itching driving me crazy. K, I wish it were that easy -- take Benedryl , get brain and AN damage, no more surgery. You know, I told my internist before I knew I had an AN, that if I could take a pill and make this go away I would be very happy. Maybe someday there will be one. In the meantime, I'll settle for the good advice, sense of community and zaniness that goes on here.
By the way Steve -- we're all curious -- just how well can you knit?
Wendy
-
By the way Steve -- we're all curious -- just how well can you knit?
Now, now, as we all know, the most important virtue for AN patients is patience. As we always say, it gets better with time. :D
Steve
PS: Pith helmet cozies with ice cube pouches? ???
-
Poor Steve. First it was your average knit hat, then it was knit hats with ice cube holders. Now we are up to pith helmet covers with cozies ::)
Note to Steve - buy us all a couple of drinks at the symposium, and chances are we'll forget all about the hats ;)
Jan
-
K - you think you aged quickly - yesterday Paige told me I was 116 years old. :'( Talk about robbing the cradle - she said Daddy was 22.
I think we need to work on our math skills around here...
Lori
-
Lori -
I have to say my girls are good to me in that way, they tell everyone I'm 36. If only that were true, but at least they seem to have all their friends convinced!
Wendy
Steve - If you buy me a marguerita I'll not onlly forget the hats but I'll teach you how to knit (as much as I know anayway)!
Wendy
-
Steve,
I am very greedy and would like a margarita AND a hat. ;D
Lori
-
Lori -
116 ???
Guess I'm younger than you after all ;) And congratulations on the child groom ;D
Jan
-
Lori -
Yup- guess I'm younger than you too. You must be very special to get someone that young interested in you. Either than, or he he REALLY likes older women! Sorry, but I couldn't resist!
Wendy
-
I don't think he'd care how old I was as long as I can cook!
Lori
-
Lori -
Wow! 116 years old, still going strong and you can cook!! No wonder he married you, you're quite a catch!!
Wendy
-
Well, yes,I like to think so! ;D
However, you have to remember, he's been in the Navy for almost 18 years - I can guarantee anything I cook has got to be better than what he's used to on the ship! I keep telling him one of these days I'm going to open up a can of Alpo, put a garnish of parsley on top and he'd probably want seconds! So, I don't need to be a gourmet, I pretty much just need to know how to work the can opener and the microwave.
Chef Lori
-
Wow! Lori, you cook!
You're a better woman than I am ;)
-
I had a second MRI at the Massachusetts Eye and Ear Infirmary yesterday. The space was so tight I thought I might not fit. The first one I had at my local hospital was alot more open even though I never asked for an open MRI. I'm not claustraphobic or I would never have lasted yesterday. The top of the machine was right on top of me. No breathing room. I quote the technician, "They don't have this technology in the suburbs. People come from all over the world for this machine." Considering that, 40 miles wasn't so far to travel.
The consultation with the surgeon was postponed to Friday because he had an emergency. Currently, I feel fine except for the tinnitus and hearing loss.
Stay tuned...
-
Hi iholl,
I know what you mean about the open MRI. I am going for a follow-up MRI and am hoping and praying it is an open MRI. I felt sick during the first one and it was an open MRI. If this one isn't I'll probably panic. Now that I said that, I should probably check and find out which it is. Anyway, good luck. I hopw you get the results and meeting with the surgeon soon.
Wendy
-
Hi lholl36233, :)
I will be thinking about you. I got through the TIGHT special MRI having claustrophobia and happy pills! Good luck with you consult! let us know how it goes, we are here for you!
Mary
-
lholl -
I, too, am anxious to hear what your doctor has to say. Good luck Friday :)
Staying tuned,
Jan
-
Happy pills, wow they never offered me any. They kept me in the machine for 1.5 hours and about an hour in I really had to use the bathroom and they got so upset with me. When you got to go you got to go. I bet they wished they had given me the happy pills. ;) 16