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Author Topic: Let there be movement!!  (Read 7255 times)

Darren

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Let there be movement!!
« on: November 25, 2009, 01:22:47 pm »
Hey Everyone,

So I'm one week shy of my 6 month anniversary of my removal of a 3.3 AN via translab approach.  I just had my first movement on my face and im estatic! When I try to smile real slow the corner of my mouth on my AN side actually starts turning up! Just a little tiny bit- hardly noticable. Everyone at work etc. keeps saying im looking better, but this is the first actual movement- besides the constant twitching on my nose, and eyebrows. I now am having a pulling/twitching sensation around my incision, on the side of my head-I'm thinking its the nerve tightening.. anyone have this?

Darren
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saralynn143

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Re: Let there be movement!!
« Reply #1 on: November 25, 2009, 01:30:34 pm »
I'm happy for you, Darren. I started out with a little bit of movement by my nose (snarl) at 3 months, and like you, movement at the corner of my mouth at six months.

Truly something to be thankful for.

Sara
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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

Nickittynic

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Re: Let there be movement!!
« Reply #2 on: November 25, 2009, 01:33:56 pm »
Woohoo! That's great news!  ;D ;D
I'm really happy for you and it gives me hope for my own recovery!
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25 year old OBGYN nurse, wife, mother of two
5.5cm x 3.1cm left side AN removed via retrosigmoid 9/09 @ Hopkins
SSD, Tinnitus, Chronic Migraines, Facial paralysis (improving!)
Resolved - Left sided weakness, Cognitive issues
Gold weight, upper and lower punctal plugs, tarsorrhaphy

mandy721

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Re: Let there be movement!!
« Reply #3 on: November 25, 2009, 01:34:47 pm »
Darren,
It is fantastic to hear about your facial movement. I am so happy for you.  My husband is almost 4 months out from surgery and he is hoping for some facial movement on the affected side. Ken hasn't mentioned any pulling or twitching, but is sounds like nerves working!
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Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

Darren

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Re: Let there be movement!!
« Reply #4 on: November 25, 2009, 01:54:20 pm »
Yes its a start- There is a really good youtube video by a guy named "Daran" ironically that had a 3.9 AN removed-He had a ton of complications and one was not being able to smile etc.  He just posted a follow up video 11 months post op and he can fully smile again. He gave me hope and a week later I started to be able to see movement- I mean I can actually control the corner of the mouth I feel it! Its inspiring for us all.
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leapyrtwins

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Re: Let there be movement!!
« Reply #5 on: November 25, 2009, 02:29:27 pm »
Yea, Darren!!

Certainly something to be thankful for this Thanksgiving  ;D

Congrats!

Jan
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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: Let there be movement!!
« Reply #6 on: November 25, 2009, 02:59:45 pm »
Hi, Darren ~

Congratulations on your progress in regaining facial mobility.  Definitely a Thanksgiving to remember.  May the movement continue! 

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.

epodjn

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Re: Let there be movement!!
« Reply #7 on: November 25, 2009, 03:49:37 pm »
Hi,
I know Daran. I started following his youtube video's because our surgery dates were so close. I was blessed not to have all the complications he had. It was uplifting to see how well he dealt with everything. We emailed a few times but I haven't heard from him for a while. I checked youtube but can't find anything new from him. Let me know where you found it.
I started having movement at 7 months and now at 11 months I've gone from a HB6 to a HB4 and it's still getting better!!
Julie
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Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

Jeanlea

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Re: Let there be movement!!
« Reply #8 on: November 25, 2009, 08:34:34 pm »
Hi Darren,

Fantastic news! Those first movements are so uplifting.  Before my mouth startted moving again I couldl "feel" it inside my mouth before I could see it.  I would get a tightening feeling in my face and then shortly after that there would be more movement.  Always in very small increments of course.  Even yet today, four years after my surgery, I continue to get the tightening times and tingles.  I was so eager to have my smile back.  I can smile now.  Even though it's not my old smile I'm very thankful for it.  Hopefully this will be the beginnig of many new movements for you.

Jean
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translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

stoneaxe

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Re: Let there be movement!!
« Reply #9 on: November 26, 2009, 07:28:10 pm »
Congrats...great news...those 1st movements feel so good. Do lots of exercises...chew gum constantly. My experience has been similar. Its been about 2 months since I noticed the 1st improvements and it gets better every day.
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Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

Denise S

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Re: Let there be movement!!
« Reply #10 on: November 26, 2009, 08:02:47 pm »
Hey, if you look at my pictures on my blog, is that how most of your 'paralysis' looked too??   Just curious still
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W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

yardtick

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Re: Let there be movement!!
« Reply #11 on: November 26, 2009, 09:31:12 pm »
Good for you  ;D

Anne Marie
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Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Adrienne

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Re: Let there be movement!!
« Reply #12 on: November 26, 2009, 10:12:18 pm »
SO exciting, and I'm sure *just* the motivation you needed!

Adrienne
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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!

lawmama

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Re: Let there be movement!!
« Reply #13 on: December 23, 2009, 10:46:55 am »
That is fantastic news!!!!  Congratulations, and I hope it is just the start of more good movement to come.

Lyn
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9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

mom of AN pt.

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Re: Let there be movement!!
« Reply #14 on: January 23, 2010, 12:09:48 pm »
My daughter is now 21, had AN surgery at 16 and her AN was considered large.

She had facial paralysis but hers rebounded a bit faster than normal...(her youth probably) but I do recall her mentioning sensation around her incision for a long time after the surgery... she described it as mildly painful however...but here's the good news.  Her face, ....all back to normal.

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