Can you hear me now?

[lholl36233]

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...

[lori67]

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

[leapyrtwins]

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 

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

[leapyrtwins]

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?    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

[lholl36233]

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...

[Kaybo]

Jan~
I must have missed something (surprise there)...what is Divino(the first time I typed division   - I do know what that is!!) and Intenso??

K

[OMG16]

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

[leapyrtwins]

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    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 

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

[leapyrtwins]

Thank you for your support.  You guys are better than doctors.

And we get paid a whole lot less 

[oHIo]

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. 

[wendysig]

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

[Kaybo]

Wendy~
Benadryl maybe??  Hey, if it damaged your brain maybe it damamged the AN & now you won't have to have surgery!!!   

K

[leapyrtwins]

You're cracking me up here K 

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

[er]

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

[sgerrard]

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