Author Topic: Thank you all for such a nice warm welcome!  (Read 3405 times)

lauralynn

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Thank you all for such a nice warm welcome!
« on: March 12, 2009, 08:47:27 pm »
Thank you to all that responded to my posting "recently diagnosed and little (alot) scared".  I was a tad bit stressed when I came to the forum for the first time.  When I saw all the reponses it really lifted my spirits.  I've never been to a discussion forum before this so I'm still figuring out how it all works.  I'm a bit frustrated this week because I requested to get one day off of work before my surgery (April 14).  My employer denied my request.  I went to HR and got no where.  I just need one day to take care of some things, make phone calls...I'm sure you all know there's a ton to take care of before you go into the hospital. I have to tell you all that responded to my post, it  really helped to ease my mind.  It really made me realize that yes this is a serious surgery but alot of people have had it done and have made good recoveries.  I know everyone has a different story but it is encouraging to me knowing that you all will be here.  My neurotologist called me the other day and asked if I wanted to have a BAHA implanted.  I said yes, I will be thrilled to be able to hear out of my left ear again!  If anyone has had one implanted could you share how it has worked for you?  I want to thank you all again for all of your kind words.     
4 cm left AN/diagnosed 1/23/09
Translab 4/14/09
Cyberknife 7/09
Gold weight implant 8/09
Barrow Neurological Institute, Phoenix
Dr. Syms and Dr. Porter
Balance issues, 100% hearingl loss (left ear), tinnitus, facial numbness/pain,
chronic fatigue, weakness, eye issues

God Bless everyone

wendysig

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Re: Thank you all for such a nice warm welcome!
« Reply #1 on: March 12, 2009, 09:36:45 pm »
Hi Lauralynn,

I'm glad to hear you're feeling better about your upcoming surgery but sorry to hear your employer is so unsympathetic.  I know you've been handed a tough diagnosis but you will get through this.  I think most of us have come to realize we  are stronger than we ever thought, and stronger because of all of the wonderful people here. 

I wish I'd been able to have my BAHA implant done at the same time as my AN surgery, but my doc prefers to stage the procedures.  I did try the demo in October and promptly fell in love with it.  The demo is a BAHA on a headband which my doc placed on me and then had me close my eyes while he walked around the chair I was sitting in and around the examining room snapping his fingers and talking to me.  It was just amazing -- no matter where he was I could hear him!  I had already read a lot about BAHA on my own and discussed it with him in detail so I was 99% sure I wanted it but the demo solidified it for me.  I just had to have it.  I had my BAHA surgery in January and am scheduled to begin using the processor on April 3 -- I just can't wait!!! 

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

sgerrard

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Re: Thank you all for such a nice warm welcome!
« Reply #2 on: March 12, 2009, 10:09:43 pm »
I just need one day to take care of some things, make phone calls...I'm sure you all know there's a ton to take care of before you go into the hospital.

Yes, there are some things to take care of, including your health. For instance, if you started getting a cold or a headache before your surgery, it would be prudent to call in sick that day, just to make sure it wasn't a problem on the surgery day. You did not read that here.  ;)

I don't quite get your employer's view. They do know you will be absent for a while after the surgery, don't they? What is one more day?

I hope the next few weeks go well for you, and that your surgery is a great success.

Steve

PS: Use the Reply button at the top or bottom of the page if you want to make another post in this topic.
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

anissa

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Re: Thank you all for such a nice warm welcome!
« Reply #3 on: March 12, 2009, 11:17:48 pm »
Sorry to hear about your employer, thats really...stinky.  I hope that you can get the time you need to get prepared.  I'm glad that you are feeling better now, this forum is amazing, isn't it?!  I've already been so blessed by the experience and good attitudes, it was really what I needed.  Best wishes on your upcoming surgery.  How neat that your Dr. suggested a BAHA off the bat, I'm anxious to hear how that works for you.

BTW, if you want you can add your pertinent info in your signature if you like (see the info about my AN at the bottom of this post?).  To do that you can modify your profile.  :)  You don't have to but its a great point of reference for people like me with a short memory, ha ha.
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

Jim Scott

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Re: Thank you all for such a nice warm welcome!
« Reply #4 on: March 13, 2009, 10:36:33 am »
Lauralynn ~

I'm pleased to learn that the forum(s) have been such a help to you, just as they were intended to be.   Thanks for the note of appreciation.  :)

However, your obdurate boss is a problem.  I think Steve's advice is sound.  One never knows what kind of (ahem) health issues may arise just before your scheduled surgery.  ;) 

Congratulations on being able to have the BAHA implant performed with your AN removal surgery.  I'm sure the BAHA will be a blessing for you, as it is for many others.

I took the liberty of adding your surgery date, which I understood to be April 14th, to our AN Treatment Calendar:  http://my.calendars.net/an_treatments/d14/04/2009?authenticate=&display=M&style=B.  If I have the date wrong or you want to add or correct anything, feel free to do so or send me a PM and I'll gladly do it for you.



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.

kenneth_k

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Re: Thank you all for such a nice warm welcome!
« Reply #5 on: March 13, 2009, 12:12:47 pm »
Hi Lauralynn.

I must say, I can still be surprised how insensitive some people are..........

I wish you the best and hope surgery goes well. My advice would also be to relax at least the day before any major procedure, i.e. call in sick.

Regards, Kenneth

teffaz

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Re: Thank you all for such a nice warm welcome!
« Reply #6 on: March 14, 2009, 03:43:49 pm »
Lauralynn,
Welcome! I am newly diagnosed, also, and have felt the same emotional numbness at first, and then the same comfort as you have by being on this wonderful forum.

I am so sorry about your employer's stubborness!!

My translab surgery is scheduled at Barrow Neurological Institute.  Yours also?

Teff (Brenda)

P.S. Do your mind if I send you a personal message by email?
1.5 cm. x .5 cm AN
translab May 2009
SSD (before surgery as well as after)
grateful for incredible surgeons: Dr. Porter & Dr. Syms
Barrow Neurological Institute; Phoenix

leapyrtwins

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Re: Thank you all for such a nice warm welcome!
« Reply #7 on: March 14, 2009, 06:41:26 pm »
Lauralynn -

the BAHA is wonderful - I can't say enough good things about mine  ;D

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

kathylittlejohncobb

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Re: Thank you all for such a nice warm welcome!
« Reply #8 on: March 22, 2009, 01:39:28 pm »
Hi,
Have to agree...your boss stinks!  :P
This brings to mind the old question:  How many people on their deathbed say "I should have worked more at my job."? 
Not that you're facing your deathbed now, not by any means!!!!!  But you need to be good to yourself & put yourself first, before your job.  Do something good for yourself prior to your surgery, even if that's just being at home for a quiet day.
We're in the wings praying for a speedy recovery for you,
Kathy
Retrosigmoid at House/St. Vincent's in Los Angeles 4-4-06; partial hearing saved on AN side;
Dr. Marc Schwartz & Dr. Rick Friedman, my heroes!

Denisex2boys

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Re: Thank you all for such a nice warm welcome!
« Reply #9 on: March 23, 2009, 02:10:42 pm »
I am so sorry your employer is being so insensitive - - that is one thing I completely have on my side is my employer - - they have been absolutely terrific.

I hope for better days ahead for you!  :)
- Oct. 16/08 - 12 hour 'blob-ectomy' at LHSC in London, ON - Dr. Lownie and Parnes
- Some internal facial numbness (cheek, tongue, eye), SSD, headaches (getting better), dry eye, some balance issues..... but othwise AWESOME!