Author Topic: Another nine month update  (Read 3802 times)

wendysig

  • Hero Member
  • *****
  • Posts: 1937
Another nine month update
« on: April 29, 2009, 07:52:01 am »
Hi all,

Well,  April 25 marked nine months since my surgery and I really have very few complaints.  I was just saying to my husband last night modern medicine is nothing short of miraculous.  I wear glasses or contact lenses to improve my eyesight; have caps on teeth that needed more than a filling;  during my AN surgery my doc put fat from my abdomen in my head to fill up the empty spaces and help  prevent CSF leaks and  titanium plates and mesh to replace the bone that had been drilled away; and now I have a titanium post on the side of my head that I snap my BAHA onto.  What's next?   ;D ;D

In all seriousness, I'm very thankful for these improvements.  ;D ;D   I am very thankful to have very few issues post-op.  My neck just below my scar still feels kind of weird,but doesn't hurt -- just still a little tight.  The right side of my tongue still feels strange sometimes.   My balance,while very much improved, is not back to where it was, although like Marci, my husband and kids tell me I've been off balance for years -- enough for them to see but not enough for me to notice that much myself.  I walked on the beach earlier this month when I was on vacation and am happy to say that it was MUCH easier than it was last summer.  I didn't feel like I was about to fall on even one unsuspecting sunbather.   ;D ;D  My BAHA has helped a lot with the problem of being SSD and made my life easier.  Putting it on every morning has become as natural as brushing my hair; although I have some cognitive problems, they are not terrible.  Every now and then, I find myself looking for a word I know should be right there andi isn't and just won't come to me no matter how hard I try and my memory is not quite what it used to be.   I miss having a great memory (I did prior to surgery)  since this is still new to me.   Things could definitely be much worse --  I have truly been very, very lucky.

Wendy


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!

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7449
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Another nine month update
« Reply #1 on: April 29, 2009, 08:50:32 am »
wendy!!!!!!!!  great update! :)  Continued wellness wishes to you.... and no, not are you just lucky... but you are truly blessed! :)

xo
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

moe

  • Hero Member
  • *****
  • Posts: 1697
Re: Another nine month update
« Reply #2 on: April 29, 2009, 09:01:37 am »
Wonderful news, Wendy!
So glad to hear that you are doing well with the "new you."
Life will always be different for us, just a matter of adjusting, and taking those good days with the bad days. ;)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

jerseygirl

  • Hero Member
  • *****
  • Posts: 801
Re: Another nine month update
« Reply #3 on: April 29, 2009, 09:19:16 am »
Wendy,
Wonderful, absolutely fabulous news! Way to go! As far as your memory goes, it will return better than ever. Mine did, so should yours.

       Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

wendysig

  • Hero Member
  • *****
  • Posts: 1937
Re: Another nine month update
« Reply #4 on: April 29, 2009, 10:03:28 am »
Phyl - You 're right I have been blessed.  Blessed with wonderful doctors, the wonderful friends I've made here and my family. I could not have asked for a much better outcome (retaining  my hearing would have been nice but with BAHA,my  hearing loss is not that bad).

Maureen - Thanks for your reply.  Yes, I am doing my best to embrace the "new" me.  Having all of y ou to talk to has been a tremendous help.

Eve -  I hope you are right about my memory getting better -- as you can see, I must have gone back to edit something and  forgot I typed my name already and did it again!    :-[ :D
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!

nteeman

  • Sr. Member
  • ****
  • Posts: 325
  • Back to Mono
Re: Another nine month update
« Reply #5 on: April 29, 2009, 10:28:02 am »
Great post Wendy! I'm so glad to read that you are doing so well.

I hope to see you at the next NYC area get-together.

Cheers,

Neal
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
http://www.facebook.com/neal.teeman

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Another nine month update
« Reply #6 on: April 29, 2009, 02:11:56 pm »
Wendy -

Good to see you - you've been gone for a little while.

Thanks for the update; it sounds like things are going very well for you and that makes me happy  ;D

Did you ever decide if you're going to be able to attend the symposium?  Lots of us would love to meet you.

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

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: Another nine month update
« Reply #7 on: April 29, 2009, 03:48:14 pm »
Wendy ~

Thanks for that positive 9-month update.  I'm pleased to learn that you're doing so well less than a year out of surgery.  Good job!  :)

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.

wendysig

  • Hero Member
  • *****
  • Posts: 1937
Re: Another nine month update
« Reply #8 on: May 01, 2009, 10:13:44 pm »
Hi Neal, Jan and Jim,

Neal - I'm looking forward to our next get together too and will be interested to see how you feel about TransEar after you've tried it for a while.  My doc  told me it was not quite as good as BAHA, in his opinion, but he is not SSD so he hasn't really experienced either first hand.  As you know, I love my BAHA and would have the surgery all over again if I had to.  It was one of the best decisions I ever made.

Jan - It's good to be back.  Between vacation, getting back on schedule and other things, I didn't get back on the forum as soon as I thought I would.  Life is finally returning to its usual routine.  I'm still not positive, but it looks like I will not be able to make it  to the symposium.  We got hit pretty hard in the stock market and our Florida vacation may have been the only one for this year -- things are kind of tight..    I would love to meet all of you too, but if I dont' make it this year, hopefully, I'll make the next one.

Jim - Thanks for your good wishes.  I am very pleased with my recovery so far.  Hopefully, things will continue to get even better.

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!

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Another nine month update
« Reply #9 on: May 01, 2009, 11:32:42 pm »
Wendy -

I'm very familiar with that "tight" feeling - prices of everything are rising and I'm still stuck with the house I'm trying to sell.  When I agreed to list it 18 months after my divorce I figured it would sell pretty fast.  WRONG.  I have a mortgage from hell and no buyers in sight  :P  Oh well, at least the kids are happy here.  It wouldn't break my heart if they get to live here next year and graduate 8th grade with their classmates.  Maybe we'll be able to sell it next summer so they can start high school in a new district.

If the symposium wasn't local for me, chances are I wouldn't be able to attend this year either.

There will be more symposiums - every other year to be exact - so I'm sure we'll get to meet you at one of them.

You'll definitely be in our thoughts, though.  We'll have Steve buy us lots of drinks in your honor   ;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

wendysig

  • Hero Member
  • *****
  • Posts: 1937
Re: Another nine month update
« Reply #10 on: May 02, 2009, 10:59:38 am »
Jan -

I haven't quite given up hope of coming but I am starting to save my pennies for the next symposium.  I will definitely not miss that one.  It would be great if Steve bought you all a drink in my honor.  He's such a great guy -- so thoughtful!! ;D

Wendy

P.S.  I just posted a great  BAHA moment under Hearing Issues.  I think you, even more than most, would appreciate it.

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!

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: Another nine month update
« Reply #11 on: May 02, 2009, 11:10:15 am »
Wendy~
Glad that everything is OK and you are adjusting to the NEW (& improved) you!!  Sorry we won't see you in Chicago but if there is still a glimmer of a chance, we'll keep hoping!!  I think Jan could share her room if you could stand her snoring (but I better not speak for her)!!  ;)

K
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!

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Another nine month update
« Reply #12 on: May 02, 2009, 03:20:00 pm »
Sure, I'll share my room - but as Kay said, I do snore ::)

At this point I have a king-size bed, but am on a waiting list for a suite.  We'll see what happens.

I'm sure it's a busy weekend at The Drake.  In addition to the symposium, the Air & Water Show is going on downtown and it always draws huge crowds.  There's probably a million other things going on that weekend, too.

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

wendysig

  • Hero Member
  • *****
  • Posts: 1937
Re: Another nine month update
« Reply #13 on: May 08, 2009, 06:25:26 am »
Jan-
I appreciate the offer, but things are still very much up in the air and probably leaning against my going.  I'm just not ready to accept defeat yet.  As for your snoring, I doubt you snore anywhere near as loudly as Rob and when I lay on my left side, I can't hear him.   Grin

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!

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Another nine month update
« Reply #14 on: May 08, 2009, 06:52:43 am »
Wendy -

if you change your mind, the offer is open.

If you don't get there, we can always plan on 2011, 2013, 2015, etc.

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