Author Topic: Getting Prepared - Thoughts?  (Read 5861 times)

Ancora Imparo Girl

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Getting Prepared - Thoughts?
« on: March 07, 2011, 12:27:33 pm »
Greetings AN friends!

I got another MRI (6 months after the one that diagnosed my AN) and the darn thing has grown. I have an appointment on Thursday with my ENT and he will probably talk about scheduling surgery. He wanted to wait and watch to see if it would grow. Of course it did.

Nevertheless, I only have 10% hearing in my AN ear and it seems to be dwindling even more. All I hear is noise and the tinnitus is horrible. I want to prepare for having my inner ear removed and being completely deaf in that ear.

Do you have suggestions? Should I start wearing an earplug in the AN ear to start getting used to it? Has anyone tried this? I tried it this weekend but it was frustrating.

I've kept a positive attitude, but the hearing thing really has a way of getting me down. I am so thankful to have good hearing in my non-AN ear, but jeesh, not hearing in the other ear is so frustrating.

By the way, I will more than likely get the BAHA at the same time I get my AN surgery. This is good and positive news.

I know that hearing loss is a grieving process ... but it's really making me sad. I could use your suggestions.

Thanks in advance.

Joey Mechelle

Translab surgery, simultaneous BAHA sleeper insertion 5/4/11 (no complications) • BAHA Abutment insertion 8/10/11 (device activation 9/14 - hopefully) • I'm a 38-year-old, single mom, magazine editor, volunteer, friend, daughter, niece, grand-daughter and music lover.

james e

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Re: Getting Prepared - Thoughts?
« Reply #1 on: March 07, 2011, 12:47:13 pm »
I had only about 15% of my hearing when I had a translab and became SSD.  To tell you the truth, I didn't really notice that much difference. If you have surgery, you'll have plenty of SSD, so I don't see any need to plug up your ear now to get used to it. It's not a big deal to be SSD. You can't hear much now in your bad ear, so it probably won't have a profound impact on your life.

Almost all of have some type of disability from our ANs...some are just  awful, but most of have a pretty good out come. I would place SSD on the pretty good out come side.

Kaybo

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Re: Getting Prepared - Thoughts?
« Reply #2 on: March 07, 2011, 01:19:35 pm »
Hi Joey Mechelle~
I am sorry that you are so sad/upset about losing your hearing and that is perfectly understanding however, I have to agree with James that it was not that big of a deal for me...AND how wonderful is it that you are getting your BAHA at the same time??  :) When I had surgery, it was a pretty rush, rush thing and I didn't even know that I would wake up deaf in oe ear!!

Take you time and work thru it, but know that everything will be OK in the end!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Ancora Imparo Girl

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Re: Getting Prepared - Thoughts?
« Reply #3 on: March 07, 2011, 01:26:08 pm »
Thanks for responding.

I think I am feeling sorry for myself today. I rarely do that. I had a horrible experience at brunch yesterday. It was loud. I couldn't hear my friends. I couldn't hear anything but noise. It was frustrating. And I couldn't enjoy my bacon. Hahaa.

But getting real responses from those who have been through it all really makes me feel better. More positive. And lucky to have you.

Thank you!
Translab surgery, simultaneous BAHA sleeper insertion 5/4/11 (no complications) • BAHA Abutment insertion 8/10/11 (device activation 9/14 - hopefully) • I'm a 38-year-old, single mom, magazine editor, volunteer, friend, daughter, niece, grand-daughter and music lover.

Jim Scott

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Re: Getting Prepared - Thoughts?
« Reply #4 on: March 07, 2011, 04:15:03 pm »
Joey Mechelle ~

As always, I'm sorry to learn of another AN diagnosis and the impact that has on the recipient (you).   However, I'm glad you've been able to maintain a positive attitude so far but of course your unilateral hearing loss is going to be discouraging.  You've enjoyed normal hearing all of your life and now it's being severely compromised - and you can't stop it.  Not fun.  I was (sardonically) 'fortunate' to have my growing AN (unknown to me at the time) very slowly compromise my ability to hear in my left ear so when I finally saw a doctor, had my MRI and was diagnosed, my bilateral hearing was effectively gone and I had, (almost unconsciously) adapted to that reality.  So, when I woke up from AN debulking surgery and couldn't hear in my left ear, it was of no real consequence.  Still, I miss having 'normal' hearing and can understand why losing it is upsetting you.  In my non-professional opinion, your angst is perfectly normal - and it will pass.  Having the BAHA, although not a panacea for the hearing loss, will be a huge help to you as you recover from the surgery and resume your life.  Many of our members can attest to this.  I chose not to go the BAHA route because I didn't feel I needed it.  I'm retired and, as I noted, have adjusted quite well well to being SSD (Single Side Deaf).  However, you have a busy life with many obligations and so, the BAHA is very likely the best choice for you at this time.  I trust that you'll get through this experience just fine.  Feel free to use us as a resource, sounding board or just a place to come where folks will understand what you're going through because most of them, in some respect, have had a similar experience.  I'm one - and there is an abundance of folks here that want to help and support you as you go through your 'AN experience'.   Feel free to call on us whenever you feel it necessary.  We'll respond.  I promise.

Jim      
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

ombrerose4

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Re: Getting Prepared - Thoughts?
« Reply #5 on: March 07, 2011, 06:18:08 pm »
Hi,

My hearing was normal presurgery- no loss at all. The first two days after surgery I kept getting these weird sensations and noises in my ear. It sounded like an electrical connection that was dying and then finally, there was nothing in that ear at all. Completely deaf! takes awhile to get used to, but compared to my post op headaches and face pain, the hearing loss is no big deal. I do have a Baha, which is wonderful but not like real hearing and I prefer to avoid noisy parties and restaurants even with the Baha. Since you only have 10% hearing now, you will probably adapt alittle faster than I did. Good luck and let us know how you do :)
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

leapyrtwins

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Re: Getting Prepared - Thoughts?
« Reply #6 on: March 07, 2011, 08:27:37 pm »
Hearing loss is a grieving process.

I mourned my loss for 9 months before I had a BAHA implant  :'(  Most depressing 9 months I've ever been through - and I've been through a lot in life.

The day I tried the BAHA demo it was like the sun broke through the clouds and the day my insurance company agreed to pay for my implant and processor it was like I won the lottery  ;D

BAHAs are incredible.

Good luck,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

ksiwek

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Re: Getting Prepared - Thoughts?
« Reply #7 on: March 08, 2011, 08:20:23 am »
I agree with Jan.  Hearing loss is a grieving process.  You have to give yourself the permission to feel sad, mad, frustrated and angry.  It took me awhile to accept and grasp the 'new me'.  What I found, once the dust settled, is that I have been given more than has ever been taken from me and that life is sweeter and more meaningful (okay, so having a baby at the same time contributes to that, too  :P)  In addition to this forum, it really helped me to talk about it to my husband, friends/family and a therapist.  I believe it helped me move through the grieving process more quickly and helped me from getting too depressed.  I also kept a journal.  Just be patient with yourself and know that as time passes, it will get easier.

Good luck!

Kris
Translab 6/4/10 for 4+ cm left AN.  Drs Friedman and Schwartz at HEI saved my life!
BAHA surgery on 10/7/10 with Dr Battista of Chicago Ear Institute (Oticon Ponto Pro)

Lynn Mc

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Re: Getting Prepared - Thoughts?
« Reply #8 on: March 08, 2011, 10:15:03 am »
Jan is right on.  I also grieved for my hearing.  Took a little time to get use to it but it is OK now.  I am scheduled for a BAHA next month.  The demo was wonderful!!!  I think I also grieved more over my balance.  It was a more much harder for me early on to adjust to that.  We all ran the total gambit of emotions and still do.  You are not alone.  The forum is a great place to be.
Translab 01/22/10.  12 x 11.7 x 8.2 mm.
Dr's McKenna/McCall at Mass Eye & Ear,
Dr. Barker at MGH. 
SSD - No other significant problems post surgery, just some minor inconveniences!  Yipee!!
BAHA implant 04/08/11 Dr. Merchant
BAHA Gotcha 07/25/11
"Life is Good"

Ancora Imparo Girl

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Re: Getting Prepared - Thoughts?
« Reply #9 on: March 09, 2011, 12:46:40 pm »
You all are so wonderful and helpful. This forum is a real blessing. Thank you all for your encouraging words.

I go to doc tomorrow. I am going to ask for the BAHA demo - I can't hardly wait. I doubt he'll do it tomorrow, but still I can't wait.

I'm thinking I will have a surgery date or at least some options tomorrow.

The tinnitus is so bad right now and I only have 30% balance function, so it's sometimes hilarious to see me walk. However, I am doing tai chi (those of you with balance issues should definitely give it a shot) and walking a lot at night as a sort of physical therapy. Walking in the dark is when I am dizziest - I am trying on my own to improve that.

What an amazing and unique group of people we have. Acoustic Neuromas - jeesh, who would have ever thought?!!?!

Take care,

Joey Mechelle
Translab surgery, simultaneous BAHA sleeper insertion 5/4/11 (no complications) • BAHA Abutment insertion 8/10/11 (device activation 9/14 - hopefully) • I'm a 38-year-old, single mom, magazine editor, volunteer, friend, daughter, niece, grand-daughter and music lover.

jaylogs

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Re: Getting Prepared - Thoughts?
« Reply #10 on: March 09, 2011, 02:36:35 pm »
Hey Joey, I know how you feel about the hearing thing.  I did survive my surgery with my hearing intact, but besides being good for judging direction and when wearing an iPod earbud, it's not good for much else, so I went with a BAHA.  I just got the abutment in, so it will be 3 months before I can turn it on...I can't wait.  And I know you will just love even a demo version of these things, they are cool!  Good luck and let us know how it goes!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

cindyj

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Re: Getting Prepared - Thoughts?
« Reply #11 on: March 09, 2011, 02:59:20 pm »
I had perfect hearing prior to my translab surgery, so definitely had to get used to the SSD thing, but I did.  I think I mourned the loss more during the weeks leading up to surgery than I did post-op, not knowing what it would be like.  I prepared myself for the worst, but it has not been too bad...for me, anyway.  I know (and understand) that many have a very difficult time with it.  I did have a chance to demo the BAHA briefly at our last support group meeting...was pretty cool! 

I only have 30% balance function, so it's sometimes hilarious to see me walk. However, I am doing tai chi (those of you with balance issues should definitely give it a shot) and walking a lot at night as a sort of physical therapy. Walking in the dark is when I am dizziest - I am trying on my own to improve that.

Joey Mechelle

As a matter of fact, I am signing up for a Tai Chi class at my local rec center - wanted to try it even prior to life with (and without ;)) AN.  Glad to hear you recommend it.  The walking in the dark is a whole other level of challenge!

Take care,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Ancora Imparo Girl

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Re: Getting Prepared - Thoughts?
« Reply #12 on: March 10, 2011, 01:34:36 pm »
OH MY GOOOOOOOODNESS!!!!!!!!!!!!!

First of all, I went to doc today and I now how a surgery date (er ... week). They are going to schedule it sometime during the last week in April. Scared ****less (pardon my foul language). But I am ready to get it over with.

But the most exciting part of the day ... I tried the BAHA simulator. And not only did I try it, but they let me take it home. They are letting me keep it for a week. I am going to beg to keep it longer. Because I'm a brat.

Doctors will do a simultaneous translab and baha surgery.

I cannot believe how well it works. I can hear everything. I am amazed and astounded. I am still not sure I really get the whole process about the bones and vibration and brain and whatever, but it's incredible. My typing is so loud. Haha.

I'm really ecstatic.

Jay, I bet you are wicked excited for the next three months to fly by. I am excited for you.

Cindy, tai chi is so relaxing and fun. I am very nearly addicted to it.

Translab surgery, simultaneous BAHA sleeper insertion 5/4/11 (no complications) • BAHA Abutment insertion 8/10/11 (device activation 9/14 - hopefully) • I'm a 38-year-old, single mom, magazine editor, volunteer, friend, daughter, niece, grand-daughter and music lover.

Kencutus

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Re: Getting Prepared - Thoughts?
« Reply #13 on: March 10, 2011, 01:39:48 pm »
Good for you!   Glad you are getting a BAHA.  ;D
"Hearing Resistance is Futile!"
Treacher Collin's Syndrome
First surgery left side 12-08, Baha Intenso 3-09
Abbutment came loose on 5-09
Bilateral Baha surgery 6-09 Baha refitted 9-09
Richard & Mark Wiet MD from Ear Institute of Chicago.

dalern

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Re: Getting Prepared - Thoughts?
« Reply #14 on: March 10, 2011, 02:18:33 pm »
Your reaction is the same as mine!  I could hear my typing (didn't realize I wasn't hearing it!) and I even hear the sheets rustle when I make the bed!  It opened up a whole new world to me.  I had no idea how much I was missing!  I notice a big difference now when I am not wearing my BAHA!
~Dale
Dale Barnes, RN, MSN, CLNC
Tarzana, CA
1998 Sudden Onset Idiopathic Sensorineural  hearing loss diagnosed at House Ear Institute, Los Angeles
BAHA June 30, 2010 Dr. Jeffrey Harris UCSD San Diego

 


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