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Author Topic: wierd discovery  (Read 12745 times)

wcrimi

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Re: wierd discovery
« Reply #15 on: March 12, 2009, 02:50:15 pm »
Quote from: ernie h on March 11, 2009, 03:08:15 pm
i also believe what you're feeling is what they call nystagmus.if i drive over rough roads it shakes my head and causes problems.it affects your vision.

Same here!
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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

cin605

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Re: wierd discovery
« Reply #16 on: March 12, 2009, 05:45:31 pm »
yeh....i hate going any where in a vehicle...too many frost heaves her in N.H.......need to relocate to flat land.
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2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Pooter

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Re: wierd discovery
« Reply #17 on: March 12, 2009, 05:50:52 pm »
C'mon down to Houston!  We're flatter than a pancake down here.. Downside is that when someone spits out their car window, it usually floods.  Oh, and the whole hurricane thing..  But, we'd love to have ya!  4.5 million and going strong!

Regards,
Brian
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Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

CHD63

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Re: wierd discovery
« Reply #18 on: March 13, 2009, 10:06:16 am »
Oh, thank you, thank you to Sue/Syl for posting the link to "Protect Your Balance System—Or Else . . ."  I have been going for vestibular therapy every two weeks for six months now (with an extensive home regimen inbetween) so I have been told much of what was in this article, but this described so much of what I have been experiencing.  Now I do not feel like a complete hypochondriac and chronic complainer ..... to say nothing of looking like a drunk! ::)  ..... and now my husband can see that I am listening to him!

I, too, have been doing the side to side (and up and down) vision stabilization exercises .... still cannot do them as rapidly as the therapist would like to see me do without losing focus.  I also have been walking up and down the hallway to our bedrooms (where it is safe in case I lose it) ..... 10 times turning my head from side to side and 10 times putting my head up and down.  I feel like that has given me more confidence.

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

cin605

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Re: wierd discovery
« Reply #19 on: March 13, 2009, 11:32:28 am »
I actually lived for 4 months in Austin when i was 19.I had much fun but hey whats not fun when your 19! ;D
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2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Pooter

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Re: wierd discovery
« Reply #20 on: March 13, 2009, 05:21:38 pm »
Austin don't count because they're at the edge of the hill country.  Houston is where it's at in terms of flat land.  :)  I have family in Austin, so I know it well.

Regards,
Brian
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Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Kaybo

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Re: wierd discovery
« Reply #21 on: March 13, 2009, 06:09:11 pm »
Pooter~
Picture the Panhandle - FLAT, FLAT, FLAT and NO trees!!  Maybe that is why I don't have any trouble with all this...WAIT, I lived in Austin when I had surgery... ;D

K
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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!

cin605

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Re: wierd discovery
« Reply #22 on: March 14, 2009, 08:38:13 am »
Right now i live at the bottom of Great Hill if that say anything!
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2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

NancyMc

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Re: wierd discovery
« Reply #23 on: March 14, 2009, 12:37:53 pm »
You do not!  I'm probably looking at you right now!  I can see White Face and Paugus, etc. from my kitchen window!  Are you really near Wonalancet?  We should get together!  I drove my brother and sister-in-law who were visiting from AUSTIN for my mother's 90th birthday yesterday over to Quechee, VT to see the Glassworks and survived the frost heaves but just barely.  Hope you're enjoying the beautiful warm sunny day today!
Nancy in Holderness
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Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

cin605

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Re: wierd discovery
« Reply #24 on: March 14, 2009, 04:28:31 pm »
I am in newmarket,N.H.
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2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

NancyMc

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Re: wierd discovery
« Reply #25 on: March 14, 2009, 07:03:15 pm »
Oh, well, I know an instrument maker whose wife had AN surgery some time ago and who now lives in Newmarket, but otherwise, I've only been in nearby Dover and Portsmouth of late.  Lovely part of the state.
Nancy
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Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

cin605

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Re: wierd discovery
« Reply #26 on: March 15, 2009, 08:36:49 am »
Maybe we can meet for lunch some time this spring or summer?What your friends wife do?Maybe i know her?what kind of surgery did she have?how is she??
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2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

NancyMc

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  • One year and all is well, almost.
Re: wierd discovery
« Reply #27 on: March 15, 2009, 09:13:23 am »
Hmmm . . . Let's see if I can remember.  I haven't met her.  I go to Irish music sessions in Concord where I see her husband.  I do know that she had no hearing loss, oddly, so it wouldn't have been translab.  She had her surgery at Brigham and Women's with Dr. Black.  I believe she was in education but perhaps retired.  I'll check the next time I see Bob.  He makes beautiful instruments under the brand name Trilium.
I've been following your recovery and feel frustrated by your symptoms.  I truly hope that time and physical therapy will give you back your full function.  I know I will be dealing with some level of outcome less than perfect and will be frustrated with my own journey to my new normal.  I am extremely active on land and water and have trouble sitting still, so this is going to be a difficult road.
Nancy
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Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

cin605

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Re: wierd discovery
« Reply #28 on: March 15, 2009, 10:54:37 am »
Thank You.
I have 80% of my hearing i did not lose alot i can not hear your fingers rubbing everything is just really muffled the tinnitus
is really loud though.i have trouble distinguishing where sound is coming from.
Its such abeautiful day i sat in my back yard for while i really would love to go for a walk but my head feels like iits 200lbs.
I just took my contacts back out becouse i was getting the blurred vision thing & that makes my contacts even dryer.
I will look on the internet for the muscle instrument thing my son is 14 he loves stuff like that.he is 1/2 mic mac indian & very into his heritage.
I hope your recovery is short & smooth.
i do not regret choosing surgery.I had a 2cm in my vestubular/cerrabellar pontine angle.
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2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

cin605

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Re: wierd discovery
« Reply #29 on: March 15, 2009, 12:00:47 pm »
I just looked they are in Nottigham that is about 20 min, from me maybe i will check it out when i am back up for car rides.
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2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old
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