Author Topic: I just found out. :-(  (Read 22950 times)

Kaybo

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Re: I just found out. :-(
« Reply #45 on: September 29, 2008, 04:44:35 pm »
Sue~
I finally get to "see' you!!  Love the picture!!   ;D

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Sue

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Re: I just found out. :-(
« Reply #46 on: September 29, 2008, 05:10:41 pm »
Yeah, I finally decided to add my mug to the AN "line-up".  I agonized over the photo, and I was going to find one of me from 30 years ago, but finally thought - oh well! 

Sue in Vancouver USA

Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

Jackie

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Re: I just found out. :-(
« Reply #47 on: September 29, 2008, 06:12:31 pm »
Hello Sue,

You have a lovely face, can't understand why you have been hiding it for so long!!!
Your neighbor in Beaverton,
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???

Sue

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Re: I just found out. :-(
« Reply #48 on: September 29, 2008, 06:14:07 pm »
*blush*
Thank you.  But, you know - gravity has had it's way with me.  :o

Sue
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

yardtick

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Re: I just found out. :-(
« Reply #49 on: September 29, 2008, 08:00:21 pm »
Sue,

You are beautiful!!! 

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

Sue

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Re: I just found out. :-(
« Reply #50 on: September 29, 2008, 08:42:42 pm »
Ah gosh, now yer all goin' ter give me a swelled head, and everything!  ;)


Sue in, oh you know...that town next to Portland.
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

Nancy Drew

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Re: I just found out. :-(
« Reply #51 on: September 30, 2008, 11:20:05 am »
Wcriml,
 

Interesting about your hearing.  I have the same thing.  Better hearing in my nonAN ear also.  Go figure.  However, I do think the AN swells sometimes, and it affects my hearing.  I am going into GK with fairly good hearing, and I hope to come out with fairly good hearing.  Best of luck with your research, dealing with your insurance and making your decision.  My GK is next week.  I am on edge, but I am glad the date is in sight. 

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

calimama

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Re: I just found out. :-(
« Reply #52 on: September 30, 2008, 12:07:19 pm »
I just wanted to say that i don't agree that vertigo is a certainty. I am nearly 4 months from surgery and have no dizziness or vertigo. My balance is great, even with my left eye covered (due to double vision, which is resolving slowing and paralysis).

I was dizzy in the hospital (7 days) and left in a wheel chair and had a walker. But i ditched the walker after a day. I was picking up my 18 month old (carefully!) after 3 weeks. I avoided the stairs at home (only to the basement as we have a bungalow) for a month, out of caution. I was walking outside after 2 weeks (although i had company and used the baby stroller for additional support) and did my first run at 2 months. I am now back at work (wearing 2 inch heels).

I don't know if this is all "normal" and certainly i have some challenges. I just wanted to mention that everyone is different and not to assume any result is a given. I am 39 and in good health, but was sure much better before surgery... I had only some hearing loss and tinitus. On a good day i feel about 95%, happy and healthy. On a bad day i feel broken and frustrated. I definitely have a lot more good days than bad. I like to look on the bright side.... that i have a "condition" which gets a little better every day (unlike something that gets worse over time).

The recovery has not been easy, and it feels like a long long road. Everyone has a different experience. Good luck with your decision and try to stay positive. ;)
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

leapyrtwins

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Re: I just found out. :-(
« Reply #53 on: September 30, 2008, 09:37:01 pm »
wcrimi -

I don't think every doctor does the exact same thing, but there are certain commonalities to AN surgery.  I think it's fairly common to cut the balance nerve and I believe mine was cut in the course of my surgery.  The body does adapt over time and while my balance isn't perfect, it's definitely much better than it was pre-op and for the first few months post op. 

Now I only notice my balance issues - and they are fairly slight - when I'm tired.

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

Nancy Drew

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Re: I just found out. :-(
« Reply #54 on: October 01, 2008, 11:51:03 am »
Calimama,

That was such a positive story to tell.  Thanks for sharing.  Your baby looks so cute, and I bet she is happy to have her mommy doing so well.  I think there are a lot of positive stories here, and they give inspiration.

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Debbi

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Re: I just found out. :-(
« Reply #55 on: October 01, 2008, 01:54:10 pm »
Hey Sue and Jackie -
I was just in Beaverton last week visiting my parents!  Of course, we also visited some pinot noir vineyards, too!   ;D  Beautiful part of the country.

And, Sue, everyone's right - you look gorgeous!

Debbi, back in NJ
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Sue

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Re: I just found out. :-(
« Reply #56 on: October 01, 2008, 03:44:58 pm »
Thank you for the nice compliments.  That photo was taken on March 1, my 62nd birthday, just about 2 weeks short of 2 years since my diagnosis. I am scrunched between my hubby and tall son, so I had to crop the picture.  If, when I had those very brief dizzy spells back in about 1994 or so,and it'd been bad enough that I would have had an MRI,  I'd have been treated then.  For some reason I wasn't supposed to do that then, I guess.  Different path, different outcome, who knows?

Sue in Vancouver, USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

Jackie

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Re: I just found out. :-(
« Reply #57 on: October 01, 2008, 08:39:58 pm »
Ah Gee Deb,

Wish I had known you were coming, It would have been fun to meet! Did we have our great weather for you, I hope?? Next time, do let us know, we could all have a get together, including Steve and DHM, and Kelly and Sue................

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???

Sue

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Re: I just found out. :-(
« Reply #58 on: October 01, 2008, 10:38:55 pm »
You bet!  Let us know!

Sue
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

wcrimi

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Re: I just found out. :-(
« Reply #59 on: October 03, 2008, 07:11:14 am »
I saw Dr. Eric Smuhas at Mt. Sinai the other day.  He is a team member with Dr. Kalmon Post.  He did some more tests on me and feels that the chances of me retaining my hearing are in the 70% range because eveything is pretty normal now.  The only symptom I have now is mild tinitus.

I have decided to have surgery.  All I have to do now is make a decision about which team will do it   (Post or Galfinos) and set things up.  Both are very experienced and made me feel very comfortable. I am leaning towards Post only because my original ENT recommended him and told me that's who he would go to.
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

 


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