Author Topic: I'm almost afraid to say this...but...  (Read 5920 times)

MAlegant

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I'm almost afraid to say this...but...
« on: February 15, 2009, 11:20:57 am »
I think I'm actually noticing some improvement!  ;D  I've had a good week, with less pain and some feeling (but it is a weird feeling) coming back on my face.  And it's the lowest part of the right side of my face, where it was really the numbest.  It's been almost 7 months so I was beginning to think things would not change.  I think I read on here somewhere that nerves heal from bottom up, so I'm hoping it will continue to move up.  Even if not, the fact that I had less pain and discomfort for a bunch of days in a row gives me hope and makes me extremely happy.  I'm still afraid to say it out loud, lest I offend the gods, but if I slide back I'll deal with it.  Happy Sunday!
Marci
« Last Edit: February 15, 2009, 11:43:57 am by MAlegant »
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

kenneth_k

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Re: I'm almost afraid to say this...but...
« Reply #1 on: February 15, 2009, 11:27:40 am »
Hi Marci.

This is wonderful news. It makes me happy :)

Kenneth

Kathy M

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Re: I'm almost afraid to say this...but...
« Reply #2 on: February 15, 2009, 11:32:38 am »
That's good to hear, Marci!  I'm way behind you on this road of recovery and it is great to hear of victories, large and small, revealing themselves over time.  I hope it keeps progressing for you in only positive ways!!!!!

Kathy
AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

msmaggie

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Re: I'm almost afraid to say this...but...
« Reply #3 on: February 15, 2009, 12:02:44 pm »
I think you should celebrate every small measure of success.  It's what keeps us going , gives us hope.  Good for you!!!  I hope it continues to give you hope :).
Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

Jwh

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Re: I'm almost afraid to say this...but...
« Reply #4 on: February 15, 2009, 12:08:16 pm »
Woohoo!  Excellent :o :o  celebrate!
Jen
5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

sgerrard

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Re: I'm almost afraid to say this...but...
« Reply #5 on: February 15, 2009, 12:22:34 pm »
I'm still afraid to say it out loud, lest I offend the gods,

Right. I think it is safe for me to say it, though - it's about time!  :D

They are not kidding around when they say you need to be patient. I am delighted to hear that you are feeling better and having less pain.

I also hope you continue to get weird feelings moving up your face, if that is a good thing. :)

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.

texsooner

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Re: I'm almost afraid to say this...but...
« Reply #6 on: February 15, 2009, 01:14:39 pm »
Sounds great Marci....you deserve good news. I'm like Steve...here's hoping you continue to get weird facial feelings(as long as it's not painful).

I noticed a few weeks ago my AN side cheek twitching and chalked that up to it to facial movement coming completely back for me. I think it is right too about the nerves regenerating from bottom to top(at least for me). I still don't get tears on my AN side eye, but my blink is much stronger and I use much fewer eye drops than a couple of months ago. My eye socket on that side has been sore above my eye(like it's bruised) for the last few weeks...so I'm hoping that's a sign that the nerves are starting to fire better up there and maybe I'll get tears some day. If not, I'm still good with what's happened so far.

Stay positive.

Patrick
3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

yardtick

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Re: I'm almost afraid to say this...but...
« Reply #7 on: February 15, 2009, 01:20:27 pm »
You go girl  ;D

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

leapyrtwins

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Re: I'm almost afraid to say this...but...
« Reply #8 on: February 15, 2009, 01:26:30 pm »
Great news, Marci  ;D
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

wcrimi

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Re: I'm almost afraid to say this...but...
« Reply #9 on: February 15, 2009, 01:36:28 pm »
Marci

This is wonderful news!  ;D

It's actually wonderful news for many of us.

I am convinced that many of us will continue healing for a long time. It's just a very slow process. Most of the improvement comes quickly and then it slows down, but it keeps coming.  I said this in another thread, but I'll repeat it. It sometimes takes professional athletes 6 months to a year to heal from injuries and surgeries to joints, muscles, ligaments etc... Why should it be any different for the nervous system?  In fact, it probably takes even longer because we've all been rewired to some degree and that's a very complex thing.

Any time someone can report some permanent improvement or even a new temporary upward peak in anything we should all take encouragement from it!  That means we are all still moving forward even if it's too slow to notice from week to week or month to month.

Wayne

1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

catlover

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Re: I'm almost afraid to say this...but...
« Reply #10 on: February 15, 2009, 01:42:45 pm »
Hi Marci,
Great news! I agree with Steve - it's about time! Hope you will continue to heal fast.

Hugs from Helene in Sweden   :)
AN found in February, 2006, size 0,8 cm
Surgery 20th May, 2009, retrosigmoid approach
SSD and balance issues
Forever grateful to Dr Siesjo and Dr Kahlon, University Hospital of Lund, Sweden
Two AN:s found 1st March, 2016
Waiting for GK

MAlegant

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Re: I'm almost afraid to say this...but...
« Reply #11 on: February 15, 2009, 02:16:29 pm »
Thanks all, for joining me in my mini-yipee.   :D   Patrick, my eye is on the same calendar as yours; it's much better but I still need drops sometimes.  It also opens a second or so later than my other eye but blinks normally otherwise.  I'm prepared for whatever it is, but I still hope it continues to improve.  I've discovered I'm very greedy in this regard. I blame it on my 1970's upbringing.
Marci
 ;)
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

NL

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Re: I'm almost afraid to say this...but...
« Reply #12 on: February 15, 2009, 02:39:25 pm »
Hi Marci,

That's great news! I'm hopeful that things will continue to improve for you! (I'm right behind you on this journey, and was just noticing how much of the numbness has gone away on the side of my head in the last two months - though not completely...yet!)

I'm still afraid to say it out loud, lest I offend the gods...

I'm sure it's OK - I don't think typing it counts. ;)

Nancy
1.6 cm left AN diagnosed Oct. '07
1.9 cm on 2nd MRI, May '08
Retrosigmoid surgery at House Clinic/St. Vincent's on 8/6/08
(no post-op dizziness, nausea, facial or balance issues)
Thankful for a fantastic team of doctors - Dr. Rick Friedman, Dr. Marc Schwartz, & Dr. Michael Stefan

nteeman

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Re: I'm almost afraid to say this...but...
« Reply #13 on: February 15, 2009, 03:08:44 pm »
Marci,

It's great to read your good news. I hope it continues and things only get better and better every day.

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

Jim Scott

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Re: I'm almost afraid to say this...but...
« Reply #14 on: February 15, 2009, 03:19:08 pm »
Hi, Marci:

Before the bandwagon passes me by, I wanted to hop on and congratulate you on this significant improvement in your facial mobility/sensitivity.  I doubt this apparent nerve regeneration will simply disappear, but even if that were to happen, it would probably be a temporary set-back.  Frankly, it seems as if you're on your way back to normalcy in this area.  I'm not superstitious so I'll be happy to say (O.K., write) that I'm very pleased and excited (but probably not as pleased or excited as you are) about this very positive development in your healing process.  Less pain and increased sensation is a good thing.  I think you've been incredibly patient and are due for this pleasant turn of events.  Enjoy!  :)

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.