ANA Discussion Forum
AN Community => AN Community => Topic started by: LADavid on March 30, 2009, 01:45:36 am
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So let's see if this works. Based on Steve's suggestion for a follow-up to the week's events, I thought I try this to see how it works. Here's a thread for all you Fuzzy Week patients to post your updates. So this is for you Debbie, Joe, Anissa, Sue, Wendy and, oh yeah me. Let's post our results.
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Today was my BAHA Gotcha Day. This morning when I left for Dr. Choe's I was feeling kind of emotional. After all the posts here about BAHA and slightly differing opinions, I was hoping my expectiations were not set too high. This has seemed like such a long wait, although many of you have waited longer, I was afraid of being disappointed after all, in spite of being blown away by the demo. I wondered if, after all this time, I could have remembered it being a lot better than it actually would be.
I was worried about nothing -- I LOVE MY BAHA!!! It is everythng I thought it would be and more and I'm sure it will just get better! I did notice that if I plug my left (hearing ) ear, the sound from BAHA does sound a little tinny, kind of like talking over the phone with a slightly less than perfect connection. But when my left ear is not plugged, it just enhances everything I hear, with the added benefit that I can now hear sound from my right too!! ;D ;D It will take a little getting used to the idea that all hearing is taking place on my left, but even in a noisy situation, I found I can hear even better than I'd hoped. I tagged along for my daughters' dance class today and a couple of the other mothers were in the reception area too, plus some girls from the next class came in and were waiting in the reception area. With the music blaring from the dance studio (very loud), the kids from the next class making a fair amount of noise and two other conversations going on, I still was able to hear the women I was talking to without much trouble. I'm happy to say that BAHA exceeded my expectations by quite a bit.
To anyone considering BAHA but afraid because of the surgery, don't be. Although BAHA is not for everyone, don't be put off merely by the prospect of surgery. The surgery was truly a piece of cake and the end result, for me, was well worth whatever discomfort I experienced. BAHA ROCKS! :D :D :D :D :D
Wendy
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Wendy, that is such great news to close out the week! Enjoy the weekend, and keep us appraised on new improvements.
Best,
Sara
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Wendy,
Congratulations on your BAHA! I'm so glad that you like it -- mine continues to be a big help and I'm glad I've got it.
Catherine (JerseyGirl 2)
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Wendy,
Congratulations on the baha! I'm so glad you the final result met or exceeded your expectations! I'm still getting used to SSD and prefer to go a while without an aid to see how I adjust.
Ernie
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Wendy, I am so happy for you and your BAHA!!! I was able to try it out at my ENTs office the other day and it was really neat! I hope you continue to love it always. Congrats on the big wait, it must've seemed like forever!
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Wendy ~
Allow me to add my congratulations on your finally getting your BAHA and the fact that it met your admittedly high expectations. As you stated, although the BAHA isn't for everyone, it sure is a great help to those who need and want it. I know you'll thoroughly enjoy the new world of enhanced hearing now open to you. :)
Jim
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Wendy,
I'm so glad the BAHA is all you hoped for and more. I hope we have another luncheon here in the NYC area and I can sit and talk to you about it.
Cheers,
Neal
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Wahoo, Wendy!! I am so thrilled for you! I want to sit on your BAHA side at the next lunch!!
Debbi
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I'll find out Monday 4/6 when my "tube of gloom" appointment is. Hard to believe its been 5 years. Checking to see if the growth that showed up last spring and fall was for real and has continued or an anomaly.
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Hi Sara and Catherine -- Thanks for your good thoughts and wishes. I really do love my BAHA and will be positng pictures in the next day or so!
Ernie -- You are so newly past surgery I don't blame you for wanting to wait. Also, according to my doc if the BAHA surgery isn't dont at the time of AN surgery you have to wait four months anyway. I hope SSD proves easy to deal with for you, but as I'm sure you've read many times, the BAHA surgery is a piece of cake, especially compared to AN surgery. My husband and I went to lunch after we left the hospital and I felt fine.
Jim - Thanks for your good wishes. I know you adjusted very well to being SSD, as do many people, as I said, I know BAHA is not for everyone.
Anissa -- I have to apologize -- I'm not sure if I check in to see how you were doing after your surgery. From the fact that you have posted here, I would guess that you are doing very well, which I am very happy to hear. Wishing you continued good healing.
Neal, Debbi and I are thinking May might be a good month for another get together, but nothing definite yet. I'll be happy to talk to you about BAHA than and answer any questions you have now too, if you'd like.
Debbi -- I'll be happy to have you sit on whatever side you choose since I can now hear on both sides again! I'll give you a call tomorrow if that's good for you and we can dsicuss BAHA and our next New York/New Jersey get together! I'm hoping to post pictures of me and my new addition in the next day or so!
Stoneaxe -- Hope your journey into the "tube of gloom" is uneventful and you get good news. I actually have found it's a great place for a short nap! :)
Wendy
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David & Steve - Hi! Thank you for providing this space for our updates. I wasn't sure where to post, so this is great!
To all in the Fuzzy Week - i look forward to hearing your news, hoping all is well for David, Joe, Debbie and anyone else i missed.
So far, i see that Wendy is LOVIN' her BAHA - congrats!
Anissa has come thru surgery and posting already - fantastic!
Stoneaxe - i will be thinking of you tomorrow as you find out about your next MRI appointment. Hope all is well and your trip thru the 'tube' is uneventful.
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Now here is my update:
We took off Friday for UVA and the 6 month MRI.
The doctor looked at the MRI images, measured the longest side of the tumor and concluded it was somewhere between 10mm and 10.7mm. (Original measurement was 9mm) Now, keep in mind, i had the first MRI in my hometown, so i anticipated some potential slight differences in measurements - as i understand it, one mm is the 'margin of error" anyway. So - the doc concluded 'no major change' and said he will definitely be more interested in the one year MRI, which i will probably do in Dec (and take advantage of the insurance deductible!)
Knowing that i had to face the 'tube of gloom,' i decided to plan a vacation before facing it. I have been most fortunate to have just returned from a week's vacation. It was fantastic! Tortola, BVI [British Virgin Islands] - 75-83 degrees every day, we never used A/C, worked on starting a nice tan, and enjoyed plenty of drinks called "pain killers!" (That is 2 types of rum, pineapple juice and coconut milk!) The flights were smooth, and the ferry ride from St. Thomas (USVI) to Tortola was lovely!
I will try to post some pics later - our internet at home was messed up when we returned, and we just have it up and running as of yesterday.
Thank you to everyone for being so caring. What a wonderful place this is.
Sincerely,
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and enjoyed plenty of drinks called "pain killers!" (That is 2 types of rum, pineapple juice and coconut milk!)
Now that sounds like a good pain management program! Were those prescription strength or OTC? :)
Ernie
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Ernie, Hi! The one's at Pusser's were definitely prescription strength - WOW! My husband didn't want to rent a car (and drive on the left) - though 'Captain Deb' offered to be our guide (!) - so at least when we thought we had indulged in enough pain management, there was a kindly taxi driver willing to take us 'home.' This trip comes HIGHLY recommended to all!
Sue
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Sue -
I'm glad to hear you had a great vacation and got good news regarding your MRI -- hopefully, you will get good news again in December! I'll have to see if I can concoct a painkiller at our next party -- they sound deslish!
Wendy
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Ah Painkillers. I do sort of remember them well. At least, I remember the first one -- the rest was sort of blurry after that -- including how my wife at the time and our friends got back from St Johns to St Thomas in what seemed like the middle of the night.
Good news, I have the recipe that I'll post once I finish the weekly update.
And as far as an update on my part. A little background. My PT and others have all been telling me that something can be done about my hearing -- miracles in medicine. So I finally thought I'd give it a try and talked to my doctor at House -- who referred me to an Ear Doctor at House -- who confirmed -- there is nothing that can be done for my hearing. Personally, I wish people would leave me alone and just let me deal with what I have to deal with. I'm sure they mean well, but....
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David,
I'm not sure what miracles of medicine they would have been talking about. I guess the answer you got doesn't surprise me, though. I think people don't get that there is a difference between an ear problem and an ear nerve problem.
Speaking of things that need fixing, I'm not sure if this update concept panned out. Maybe it is just getting a slow start? Anyway, Debbie posted in the fuzzy week topic that her MRI was clean, Joe posted recently following his successful surgery, and Anissa had a whole topic going with hourly updates the first day, and gabbed on the phone with a friend that evening, to the amazement of all. And you and Wendy and Sue did post here. So we are half way there. :)
Steve
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Liz had her 2nd surgery...
Whitney and Becky don't have AN's but are still being tested / treated to see what they do have..
I like the summary week idea too; I never know if I've missed important news about someone.
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Steve and Keri, I'm going to try it again. It just needs some time to catch on -- I think.
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David,
I am so sorry things didn't work out with your hearing - if the docs read your medical records/history and understood your situation, i am surprised they pursued trying to 'fix' the hearing. Sometimes, with the best of intentions, the docs are simply 'not correct.' I bet you already knew all of this, so i am sorry you had to go thru all of this again.
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But we also know your sense of humor lives on, and you will be ok!
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Thanks for posting the 'painkiller' recipe! The drinks are Pusser's were particularly good - we are not sure why yet - maybe more creamy?
After several, all seems better in the world! We were grateful to have the warm breezes, a break from the routine and a beautiful place to relax.
Now i have to see if i can afford to return next year and visit all the places i didn't see the first round!
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Wendy - thank you for the best wishes on the MRI! The test was more annoying this time - should have taken the ear plugs, as well as the headset they gave me.
But worth the 'aggravation!'
Sue
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Wendy,
Congrats on the BAHA! I have to admit I'm somewhat jealous. While I'm not sure if BAHA is the route for me (being a VERY closely shaven-head guy), but I have thought about TransEAR for a bit. There are just too many situations where being SSD bites and makes life extemely difficult for me.
Regards,
Brian
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Wendy,
I'm happy too that you're so happy with your BAHA! That's all a few months away for me, so I get very interested and hopeful when you all start talking about your experiences with your new and improved hearing.
Thank you for updating!
Keri
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And here's the recipe for Painkiller's -- which is a Pusser's Rum concoction:
4 parts Pineapple Juice
1 part Cream of Coconut
1 part Orange Juice
3 Parts Rum
on the rocks and sprinkled with nutmeg
I think it's the nutmeg that does something to make it sort of hallucinogenic (hmmm, I bet that's a first for the word on the Forum).
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David,
I could go for one of those "pain killers" right now!!!
Anne Marie
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so will next week be "This week in the hallucinogenic world of AN?"!!
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David, Thanks for the recipe - i didn't write it down before i left Tortola, silly me! ;D
What's worse is i got to the airport to buy my duty free Rum, and alas, it was sold out - jokes on me!
So i will have to find an alternate method for purchasing the Pusser's.
Anne Marie - enjoy this drink if you can, it is awesome!
Who will mix them in Chicago - oh my!
Sue
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David -
I'm so sorry things didn't work out with your hearing. I hope you finally got your hearing aid adjusted to your liking though and are finding it more helpful. Thanks for the recipe for Painkillers. I think we could all use one of those drinks once in a while! ;D
Best wishes,
Wendy
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David,
I'm sorry there were no miracles for you. Like you, I wish people would just leave me alone with their hearing advice! Plus people really need to learn the difference between "hard of hearing" and deaf! You are doing a wonderful job with these updates! Thank you
Brenda
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David:
The hearing aspect of having an AN seems to bring out good intentions in people based on a misunderstanding of the actual problem (damaged/cut hearing nerve) is frustrating. I'm fortunate in that only a few acquaintances have suggested that I might want to "consider getting a hearing aid". I usually respond to that comment with a tight simile and carefully explain that it isn't my ear that is damaged, it's the nerve. I use the simplistic example of a lamp that has a working bulb, switch and so on but that has a broken electrical cord. The result is that when you plug it in and turn it on, it doesn't light - because the cord is broken. I say my ear is the same way. The hearing mechanism is fine but the nerve that transmits sound from my ear to my brain doesn't 'work' anymore, thanks to the AN, so I'm deaf in that ear. Most get it when I use that over-simplified analogy. A few have had the dreaded 'glazed-eyes' syndrome during the 30-second explanation- but I didn't like those people very much, anyway. :)
Jim