Author Topic: 7 month update  (Read 3090 times)

m4guzman

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7 month update
« on: November 13, 2009, 09:22:24 am »
Hey Everyone!  I am sorry I haven't written in a while but you can be sure that I was reading!

I think these updates help because people can compare.  Though they shouldn't because everyone is different.

I had middle fossa on April 27th, I lost my hearing (which I had 75%) my balance was fine before surgery but horriable after and
I woke up with no facial problems.  4 hours later, I could not move my cace on the AN side.  I was told that this was only temp and I should get
it back in a couple of days,  then weeks, them months,  now they are saying up to a year.

The good news is about 3 months post-op, I started getting a little movement in the corner of my mouth.  From there I started to regain
my smile.  Which was great because I could stop smirking at everyone.  I started to go to a Facial PT and he gave me a list of
exercises to do.  Improvement  over the next three months was great.  I started feeling normal.  At almost 7 months, I can close my
eye (though I am not sure it blinks) and smile.  I can raise my eyebrows a little.    I do however have a little synkinesis.  Sometimes when
I eat my eye waters and when I smile or yawn my eye closes.   I when to see the Dr yesterday and told me it is nothing the botex can't fix!

So in a nut shell

facial problems - about 75% back to normal
balance - ok during the day wobbly at night  about 80%
eye - not using anything.  But can still not wear contacts.  I can not see right out of the AN side with contact.
ringing in my ear.  It is there but I can ignore it
wonk headed - all the time  I think that it is something that you get used to.

Hearing - horriable.  I lost my hearing in the AN ear and it is really really hard to hear especially when there is stuff going on in the back.  I am going to
be tested for a BAHA next month.  I hope that this will help because it drives my crazy not knowing where the sound is comming from.

All in All I am back to doing everything that I did before surgery.  I feel about 85% normal.  I hope to feel 100% by by 1 year aniversary.

Oh yeah,  I forgot to mention that when I went back to the Dr he told my that they tested my tumor and it was a "fast grower".  I am happy I
decided to get it out!

Thanks everyone for your comments and updates.

Marybeth


1.5cm on left side MRI 2/2/09
Some hearing loss
Thinking about surgery

GM

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Re: 7 month update
« Reply #1 on: November 13, 2009, 10:19:20 am »
Excellent news...what a blessing!
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

wendysig

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Re: 7 month update
« Reply #2 on: November 13, 2009, 10:49:42 am »
Marybeth,

All in all it sounds like you're doing great and certainly have a great attitude!  Keep up the hard work with facial PT and try doing exercises for balance with your eyes closed.  It helps improve balance in the dark.

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!

ilsemor

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  • 1.4mm, translab at House w/Dr. Slattery 7/6/09
Re: 7 month update
« Reply #3 on: November 13, 2009, 11:20:32 am »
Wow, you're really encouraging me,  I had mine 4 months ago and I can't blink yet.  Same story about how long, they told me weeks and then months.  I sometimes don't know what to believe anymore.  Did you have any problem with excessive saliva?  I'm having that right now, and I'm starting to wonder if it's leakage instead.  My face is also coming back little by little, I noticed when I get stressed and tire my face pulls tight on the AN side.  I had the translab procedure at House and I didn't start  taking the steroids until 4 days after my paralysis.  I wonder if that made it prolong the re cup. 
Thank you for keeping us informed of your condition, as you know that's how we find encouragement to carry on. 
God Bless!

leapyrtwins

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Re: 7 month update
« Reply #4 on: November 14, 2009, 12:04:11 pm »
Marybeth -

good to hear from you and thanks for the update.

I think you'll really like the BAHA demo.  I loved it - and the rest is history!

Good luck and let us know what you think.

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

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Re: 7 month update
« Reply #5 on: November 14, 2009, 02:37:11 pm »
Marybeth ~

Thanks for your 7-month update.  I'm sorry you had those problems, post-op but I'm pleased to learn that most have either diminished or the issue has improved.  You seem to be adjusting well and I'm confident you'll find more improvement in the months to come.  Your attitude is refreshingly positive and your spirit is obviously resilient and helping you surmount any difficulties associated with your AN/surgery.  May even better days be ahead!  :)

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.

CHD63

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Re: 7 month update
« Reply #6 on: November 14, 2009, 04:31:25 pm »
Hi Marybeth .....

Thanks for bringing us up to speed with how you are doing ..... sounds like you are speedily getting better ..... that's what we like to hear!  Sure glad you had that fast grower removed when you did.

Best wishes.

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