Author Topic: Adrienne's postie story  (Read 18691 times)

Adrienne

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Adrienne's postie story
« on: June 04, 2009, 11:27:10 pm »
Hi everyone,

Thanks for the well wishes you posted after my hubby's quick little update.  Poor guy, I didn't prearrange him to update anything.  That was done last minute sitting at my hospital bed, by memory (mine) on his little iPhone.  Just thought if there was some quick way to let you all know I was O.K., that we should do it.

So that was last Tuesday, May 26th.  The date was up in the air for a while, for fear of getting bumped.  The day before, I finally got my call that it was 100% mine and we were moving forward.  Super great news.  I wasn't sure if I would be able to do it, but I managed to go out that night and play my last game of soccer for a very long time.  It was a SUPER GREAT distraction, and killed off several hours that would have just been spent stressing out.  Can't think of a better way to spend the night before surgery!

Surgery was uneventful.  They estimated about 8 hours, and it took just about that (maybe 8 1/2 hrs?)  I had the Retrosigmoid approach done.  When they came out, they told my hubby that it went well, they felt like they got it all, they were able to preserve my facial nerve, and they just weren't sure about my hearing.  I was warned I only had about a 25% chance of keeping any hearing, and that even if I did-it would be much less.  I had pretty much written off hearing at that point (which is a shame, since my last hearing test showed ABOVE NORMAL hearing!  Especially amazing, considering it was only the hearing loss that tipped us off to anything being wrong and prompted the MRI that got this ball rolling.  It's truly amazing that I'm on the other side of this already......).  So I don't remember much from the first night after surgery, but I do remember being awfully sore on the AN/surgery side, and not being able to rest my head at all on that side.  My nurse kept asking me to try, but I was confused and told her that the bandages/head wrap were preventing me from doing so.  I was SURE I had on some big turban type wrap.  In the middle of the night, I reached up and touched along behind my ear-amazed (and confused) to find only a small gauze type bandage.  There was no turban wrap at all.  The only reason I was sure I had it is because I had absolutely NO hearing on that side.  The silence messed me up, and made me feel like my ear was plugged with something.  That was my first experience with not hearing.  I shed a few tears at the loss of my hearing as that reality set in in the middle of my drugged up haze in the middle of the night, but quickly went back to the feeling of elation that my face was able to smile a huge symmetrical smile immediately upon waking up.  I knew what a great sign that was.

Prior to surgery, I was having a lot of trouble with my Trigeminal Nerve.  It was shocking me and causing extreme pain.  The neurosurgeon told me that my tumor was quite extensively involved with this nerve, and as a result, I have a few minor complications that may or may not go away (I'm told).  Exactly half of my face has pins and needles.  It's like coming out of dental freezing, but never fully getting out.  The sensation/touch is different.  Half of my tongue is 'fat' feeling, and it extends back into the top of my throat a bit too.  My teeth have no nerve sensation on that side either (can actually CHEW ice cream, which I could NEVER do before b/c of sensitivity).  In addition, it appears that I don't produce any fluid on the left side of my face.  No eye fluid (and reduced feeling on the left eye ball), and no nasal fluid either (always dry and cracked in there!  Odd!).  On the plus side (the very BIG plus side), I no longer have any Trigeminal pain AT ALL.  Love that.  I have no idea if these other things will go away over time, but they really are just a minor inconvenience in the big scheme of things.  I CAN SMILE, CLOSE MY EYE, and get along otherwise perfectly!  SO HAPPY!

As for my head........it feels SO FULL and filled with pressure.  I would love a little pin prick to alieviate some of the pressure! LOL.  My ear feels like it's been packed with cotton balls.  How long does this full/tight feeling last?  I'm SO ready for some relief!! 

As for my ear.......would you believe some of my hearing has come back?  Crazy.  I realize it may not stay.  But for now, I'm enjoying things 'in stereo'.  It's significantly reduced hearing, but hey-I'll take what I can get.  It would be WONDERFUL if it stuck around!  Now......the new CONSTANT ringing in that ear.....I could definitely do without.  YUCK!  I never had any ringing before, this is all brand new.  Is it possible that this could go away/be reduced after some more healing time?  Or is this just a new reality?

As for my balance.......WOW.  Would you believe NO difference from before the surgery?  Truly, I believe it was DEAD prior to surgery and I had already compensated.  I feel so great in this area, and can hardly believe I've escaped that side effect (hope I didn't just jinx it! LOL).  I'm doing really well so far, and just went on a walk with my hubby for a few blocks tonight with no issues.  Hope that continues!

So, I'm completely exhausted still (hence, the delay getting on here to tell you how I'm doing).  I know, I know.  Normal.  Hopefully I'll start to see some improvements slowly.  Tomorrow I go to the GP's to get my stitches taken out (they told me to, but it seems so early? 10 days after surgery.....).  You would not believe what a fantastic job my team did on my incision!  They barely shaved ANY hair, and the incision line is buried in my hair so well that once the stitches come out I could just walk down the street and NO ONE would know what I have just been through.  Seriously, I need to figure out how to post pictures to share!  Crazy!

I know I'll think of more things, but I guess that's good for now.  Thanks for all of the support everyone!  I'm happy!

Adrienne
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

Adrienne

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Re: Adrienne's postie story
« Reply #1 on: June 04, 2009, 11:36:17 pm »

All wired up and ready to be wheeled into surgery.  Glad I didn't know I looked like that until AFTER.  How scary!

Mid day the day after surgery.  Up to eat dinner!

Two thumbs up.  Feeling pretty good on day 2, and so thankful and happy!

Check out that tidy work!  Complete disbelief that they left all my hair.  How could they do that and not have it get in the way?  Wow!  No one warned me they would do that, I was expecting a shave job!
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

Jackie

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Re: Adrienne's postie story
« Reply #2 on: June 05, 2009, 01:22:09 am »
Congratulations Adrienne! You look absolutely beautifu!!! Wow, before and afters are really great! So very happy that your surgery went so well and that you are in such good spirits! Rest and allow yourself to be pampered! You have earned it! Blessings coming your way and a continued great recovery!
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

ppearl214

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Re: Adrienne's postie story
« Reply #3 on: June 05, 2009, 06:10:22 am »
Adrienne,

Congrats, you postie! :)  Well done!  You look absolutely fantastic and tickled to hear the update!  Please hang in there, get rest as needed and continued wellness wishes to you!

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

sgerrard

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Re: Adrienne's postie story
« Reply #4 on: June 05, 2009, 07:52:09 am »
Adrienne,

Congratulations on a great surgery. We may have to hide these pictures away somewhere. They might give people the impression that AN surgery is a piece of cake!

You do look wonderful so soon after surgery. Keep your eye moist - do you have eye drops? Who knows about the other stuff, they may go away or you may get used to them. Chewing ice cream doesn't sound so bad.

Glad to hear your are doing so well. Take care,

Steve
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.

CHD63

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Re: Adrienne's postie story
« Reply #5 on: June 05, 2009, 08:17:45 am »
Adrienne .....

You look wonderful!!  So glad you have had such a smooth surgery and recovery.  The head fullness will gradually fade away ..... some of that feeling is due to the reduced hearing in your ear.  Things sound so different, plus the tinnitus masks much of what you are hearing.

My neurosurgeon said I could expect to have improvement in my hearing for up to three months post-op but I don't think it changed much for me after the first couple of weeks.  I have a digital hearing aid now which helps tremendously for conversation in an otherwise quiet room.

Keep us updated on how you continue to do.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

cindyj

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Re: Adrienne's postie story
« Reply #6 on: June 05, 2009, 11:00:18 am »
Wow, you really look good - even that first day after surgery!  And sounds like things are going well on the inside as well.  Great recovery!  Do be sure to continue to rest some, though...for us ;)

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

NancyMc

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Re: Adrienne's postie story
« Reply #7 on: June 05, 2009, 12:39:07 pm »
Hi, Adrienne.
Congratulations on a great outcome.  My neurosurgeon told me that my increased tinnitus may improve with time.  I hope it does for you.
I know you're thrilled that the side effects you anticipated did not come true.
Best of luck with continued stereo hearing.
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

Jim Scott

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Re: Adrienne's postie story
« Reply #8 on: June 05, 2009, 01:22:14 pm »
Welcome back, Adrienne ~

Thanks for the informative account of your surgery  - and the photos.  Although, like all of us, you didn't come out of AN removal surgery completely 'unscathed', you certainly look good.  :)   The fact that your balance is basically unaffected and your hearing seems to have been preserved are all huge victories!  The tiny bit of hair shaving done is certainly a plus.  Granted, the feeling of head fullness, the ringing, the dryness and of course, the extreme fatigue are all 'normal', as you noted.  Hopefully, these will all resolve in time...a short time.

Kudos to you, Adrienne on a splendid surgery outcome!  I trust your recovery will also go well and you'll be back to your normal activities before you know it.  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.

cin605

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Re: Adrienne's postie story
« Reply #9 on: June 05, 2009, 05:25:47 pm »
Congrats Adrienne!
You look great.They really did an awsum job.No turbon woohooo!
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

tenai98

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Re: Adrienne's postie story
« Reply #10 on: June 05, 2009, 05:58:11 pm »
congrats on becoming a postie. Keep up the good work with recovery. Sounds like you are flying thru this.  BTW is that Vancouver B.C??? or
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Adrienne

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Re: Adrienne's postie story
« Reply #11 on: June 05, 2009, 06:15:26 pm »
BTW is that Vancouver B.C??? or
JO
Yes, Vancouver, B.C.!

Thanks everyone!  Got my stitches out today, and feel great.  Feels like the first day of the rest of my life!  (a tad dramatic, but feeling so happy today I can barely contain it!)

Adrienne
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

mk

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Re: Adrienne's postie story
« Reply #12 on: June 06, 2009, 05:37:56 pm »
Adrienne,

what a wonderful outcome! Congratulations, I am very happy for you. It seems that Dr. Akagami works miracles, and your story confirms the other reports  that I have read on ANAC. You are so lucky that he was your surgeon.

Best wishes for a speed recovery.
Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

ghenier27

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Re: Adrienne's postie story
« Reply #13 on: June 06, 2009, 06:28:05 pm »
Adrienne, You are exactly what I needed to read and see your photos! I have 1.6 cmm left sided AN and I have been worried to death. After seeing you! You have put me at some what ease! I have all these horriable images in my head and that is all I can think about. BUT you Adrienne have inspire me. I hope when my surgery date comes and I have the same great out come. Please continue to keep us posted on your progress. Many thanks, Debi

Kate B

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Re: Adrienne's postie story
« Reply #14 on: June 06, 2009, 08:41:41 pm »
Wow. You and Helene can be the poster girls for surgery!

BTW, I love Vancouver BC. It is one of my favorite cities.

All the best Adrienne,
Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

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