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Author Topic: I am back, somewhat  (Read 12219 times)

Rivergirl

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I am back, somewhat
« on: June 05, 2011, 06:49:44 pm »
Thank you for the well wishes!  Can't believe I have the energy to sit here and type.  What a week it has been, the surgery and post op was so much harder (still is) than I anticipated.  The Dr.s and nurses were great at Mass General, especially one intern who would not accept that I did not want to get up, he read me the riot act and he was right getting up improved everything. I am SSD on the right, tinnitus is better, I have a small amount of facial droop on right and my taste buds are gone (that may be the next new diet craze).  My husband has been a dear (so romantic, back in the shower together today, NOT!)  Ok that is it...........heading back to the prone position.
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Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

opp2

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Re: I am back, somewhat
« Reply #1 on: June 05, 2011, 07:28:52 pm »
It does get better. You'll see. My sense of taste was all screwy for the first 3-6 months or so. It's pretty much normal now. You will adjust to SSD and all the weird and wacky things that go on with it...

Keep up with the R&R Girlfriend. Congratulations and welcome to the other side.
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Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

Soundy

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Re: I am back, somewhat
« Reply #2 on: June 06, 2011, 09:30:59 am »
Rest , Rest , Rest ... this was the hardest part for me ...

taste is still not right almost 4 years later but I am used to it and have yet to starve

take care of yourself ..

and just know it does get better
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3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

mk

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Re: I am back, somewhat
« Reply #3 on: June 06, 2011, 11:27:57 am »
Hi Rivergirl,

I am glad that you are back posting. Don't worry, you will see improvements every day - just take it easy. Make sure to take good care of your eye if it is dry.

My taste is also very weird: Coffee tastes like ash, and I can't tolerate very salty or sugary foods - oh well, at least this encourages a healthier diet  ::)
Everyone recovers at their own pace - make sure to follow what your body tells you and to get plenty of rest.

Marianna
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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.

Jim Scott

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Re: I am back, somewhat
« Reply #4 on: June 06, 2011, 03:34:08 pm »
Rivergirl ~

Thanks for the update, especially considering that you're just out of surgery (sort of).  As you know, most initial post-op issues resolve in time and I hope yours do, too.  Rest - and post when you're up to it.  Oh, and welcome to 'postie-land'. 

Jim
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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.

LisaP

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Re: I am back, somewhat
« Reply #5 on: June 06, 2011, 04:56:26 pm »
Hi,

Great to hear from you, so glad that the surgery went well, are you home yet?  Please keep us posted, will you continue to post under the title "I am back, somewhat".  Also thank your son for e-mailing me.

I hope your recovery goes well, you continue to be in my thoughts and prayers and thank god that it is over.

I hope you can continue to write often, I want to keep track of how you are doing.
LisaP
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LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

Rivergirl

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Re: I am back, somewhat
« Reply #6 on: June 06, 2011, 06:33:20 pm »
Thanks for the encouragement and kind words.  I am home if I didn't mention that.  It is really hard to go through this but today was a better day (sort of), my husband pushes me to get up and takes me walking a little further each day and more times so he is being very supportive.  Tomorrow .......hope it is even better
Logged
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

ombrerose4

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Re: I am back, somewhat
« Reply #7 on: June 06, 2011, 08:10:27 pm »
Hi,

It sounds like you came through surgery well and starting your recovery. Just remember to rest when your body tells you and eat a high protein diet for good healing. Walking is great, just take your time. Are you having any balance issues? If you are you should see about getting some vestibular rehab. We are all here rooting for you :)
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Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

jaylogs

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Re: I am back, somewhat
« Reply #8 on: June 06, 2011, 09:58:14 pm »
Hey there, congrats and welcome to the other side! It's definitely baby steps for the first few weeks, but before you know it, it'll al be a distant memory.  As everyone has stressed so far, REST REST REST and listen to your body!  Keep us updated!
Jay
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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

Suu

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Re: I am back, somewhat
« Reply #9 on: June 07, 2011, 12:51:42 am »
Yeeeeeeeeeeee haaaaaaaaaaaaaaaa! Well done and a big congrats to you picking the right hubby to be going through this with.  ;D

I guess you've got the gist of it from everyone so far - when it's time to rest - rest.  :)

Gr8 to have yet another ex-ANer here.

Warm hugs and best wishes,

Suu xxoo
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4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

ppearl214

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Re: I am back, somewhat
« Reply #10 on: June 07, 2011, 03:45:54 am »
Well, m'dear... you made it to Postie-hood!  :-*  Now, as everyone has noted... rest, rest and rest.  I think you know my saying around here.... "day by day, inch by inch.......", so PLEASE take it easy, rest and sending those healing hugglez to help the cause.  Ya done good! :)

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

CHD63

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Re: I am back, somewhat
« Reply #11 on: June 07, 2011, 05:57:56 am »
Rivergirl .....

So glad the most difficult part is behind you.  It sounds like you are doing well in recovery.  Keep up the good walking and you should continue to do well.

Many thoughts and prayers.

Clarice
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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

LisaP

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Re: I am back, somewhat
« Reply #12 on: June 12, 2011, 05:16:48 pm »
Hi Cindy,

Continue to keep up posted on how you are doing, good and bad.  Again take it day by day and best wishes.

LisaP
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LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

Rivergirl

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Re: I am back, somewhat
« Reply #13 on: June 12, 2011, 06:40:11 pm »
Well, it is day 12 and I wish this was going faster.  My head is still quite swollen but the scar is healing well and the hair is growing.  It is hard to sleep at night, trying to get comfortable.  My taste buds are horrible, I crave flavor and find salt the best. Tomorrow I go to Vestibular Therapy, hope they don't make me feel worse but I hear they do.  Oh well each day I make some progresses its just all slow.  Thanks
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Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

saralynn143

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Re: I am back, somewhat
« Reply #14 on: June 12, 2011, 07:41:50 pm »
Hang in there, Rivergirl. Slowly but surely it goes get better, and we are all rooting for you.
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MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13
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