Author Topic: I'm amazed at the courage here  (Read 11979 times)

nannettesea

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I'm amazed at the courage here
« on: August 19, 2006, 10:11:30 pm »
Hi, DD (Dizzy Diva) here-
Just been perusing the posts--I don't post much, but get so much out of everyone's threads.

I just HAVE to say--we are one brave bunch of people.  I don't care that our ANs weren't cancer--what we have been through, and/or are going through, every one of us, has a lot of courage.  Whether or not there's a reason for everything (sometimes that makes me gag on bad days), we get through each day with our individual struggles and still manage to feel our feelings, love our families/friends, and be grateful when we can that we are alive and doing the best we can.

I'm determined to get well, when the universe sees fit, my screensaver affirms my health, and, well, love all "yous guys."
Nan
1.7cm x 1.4cm x .8cm, right ear
Trans-lab approach
Dr. Jay Rubinstein, U of WA
8/29/05

tony

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Re: I'm amazed at the courage here
« Reply #1 on: August 20, 2006, 12:57:00 am »
Yes its a bit like a US destroyer that was hit by 4 sucide planes in 24hrs (1944 ?)
the capt was asked "how`s it going ?"
"Well, we are afloat - but dont ask me how"
Best Regards
Tony

Gennysmom

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Re: I'm amazed at the courage here
« Reply #2 on: August 20, 2006, 09:54:21 am »
Awwww Nanner-bannaner, yous so sweet!!!!  We're just a fun, tough, bunch of sillies who like our occasional meltdown!  Oh, and venting on the soapbox!!!  And laughing at strange folk who now apparently think that this is a dating site! 

Hugs and big messy smooches....Kathleenie-beanie
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

matti

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Re: I'm amazed at the courage here
« Reply #3 on: August 20, 2006, 12:02:15 pm »
Luv Ya DD!

3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

Crazycat

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Re: I'm amazed at the courage here
« Reply #4 on: August 20, 2006, 03:07:25 pm »
Hi Nan!

     I'm 11 months post-op now. I still have some double vision and images tend to float around kaleidoscopically before melding in to a single image when I turn my head or shift my eyes quickly. My equilibrium is compromised as well even though my legs are strong from jogging 3 miles a day. I have to be careful. Luckily, I don't have the spins or full-blown dizziness. I that what you have? My heart goes out to you! Those cranial nerves in the skull base are like a wire harness that can get short-circuited in any number of ways resulting in the variety of lingering side-effects that we are experiencing.

  I remember having an inner ear infection back in 1983. I remember that the kind of swimming images and double vision similar to what I have now were a precursor - that went on for weeks - to the raging dizziness I experienced when it kicked in in earnest. I remember waking up one morning and the entire room was spinning out of control. It stayed like that for over a week before subsiding. Horrible. I had been at a nightclub the night before seeing a live band. That's what must have done me in - the volume.

    Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Peanut

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Re: I'm amazed at the courage here
« Reply #5 on: August 20, 2006, 11:20:34 pm »
Call it courage, Diva, m'dear, but what options have we, Crazycat?  (we were cut by the same team, no?  at least I think that's what Phyll said--I had to miss the brunch) I'm over three years, and I assure you my vision is much better, healing beyond the usual time frame,no more double vision when tired, or rarely.  Can type again and actually read when I could stand only 10 then 20 then 40 minutes at a time.
But shucks it ain't over.  At least there's still progress if oh so slow...
Peanut
3.5 cm AN total resection via suboccipital  April 2003 Barker & McKenna, MGH Boston one week, two weeks Spaulding Rehab
silicone punctal plugs in lower puncta for dry eye,
persistent post op head pain
Acupuncture, craniosacral treatments, Tramadol   200  reduced to 150, now 100mg. daily Feb 2007

Captain Deb

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Re: I'm amazed at the courage here
« Reply #6 on: August 21, 2006, 09:21:17 am »
WEEEEE I remember when getting the ragin outta-control whizzies was the whole POINT!!! Luckily I outgrew that one! Now I got 'em back!Talk about KARMA!!
Yes we is a brave bunch and alla we Wenches and Scallywags has a swashbucklin' courageous, no-holds-barred PIRATE buccaneer lurkin' within!

AAAAAAAAAAAAAAAAAAAAARRRRRRRRRRRRRRRRRRRRRR!!!!!!! 8) 8) 8)[/size][/color]

U No Hoo! 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

ppearl214

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Re: I'm amazed at the courage here
« Reply #7 on: August 21, 2006, 11:51:11 am »
Nan, you DD.....

My courage comes from YOU all!  I then turn it around to help others... it's a give and take... you all give, I take, then I give and another takes.. and hun, you WILL get better because we now give it to you! :)

Nuff said!
xoxoxoxoxo and all that good stuff!
P
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Captain Deb

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Re: I'm amazed at the courage here
« Reply #8 on: August 21, 2006, 12:55:10 pm »
Chasin' ya around, Phyll!
Capt Deb P-)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Crazycat

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Re: I'm amazed at the courage here
« Reply #9 on: August 21, 2006, 01:07:15 pm »
Peanut,

 Ã‚          Yes we did have the same doctors at MGH. Sounds like you're coming back. It's not easy, I know.

I'm off for a visit with Dr. McKenna this Thursday.
 
                                                                          Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

nannettesea

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Re: I'm amazed at the courage here
« Reply #10 on: August 22, 2006, 04:47:50 pm »
I LOVES you guys!!!! :D :D :D

What else can I say?

Paul, I have a constant swimming sensation in my head, worse when I move, walking is like bobbing for apples, turning head like my eyes can't catch up.

That's why I'm working on the nerves...someone told me last weekend my neuro system is like a submarine with its lights dimmed.  I'm hoping the reflexology can break through.

You are all wonderful.  This site and you have saved me more than I can say.

Pearly girly twirly girly....hugs and kisses. 

I went to see a friend getting chemo today and rubbed her feet, little acupressure.  It feels good to give back....

DD (you know who)
1.7cm x 1.4cm x .8cm, right ear
Trans-lab approach
Dr. Jay Rubinstein, U of WA
8/29/05

Captain Deb

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Re: I'm amazed at the courage here
« Reply #11 on: August 22, 2006, 06:34:13 pm »
I like to describe the loss of that vestibular nerve to people as having a "broken gyroscope." The brain has lost its sense of "horizontal steadiness."
Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Peanut

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Re: I'm amazed at the courage here
« Reply #12 on: August 22, 2006, 07:02:59 pm »
Peanut,

 Ã‚          Yes we did have the same doctors at MGH. Sounds like you're coming back. It's not easy, I know.

I'm off for a visit with Dr. McKenna this Thursday.
 
                                                                          Paul

OOOh Crazycat,
I like McKenna.  Would you find out if he accepts email and what his address is?? Please?  And say hello to Kathy Lennon, nurse with triplets who is usually there Mondays and Wednesdays. For me follow up ain't been easy.  Hope to meet you one of these times.  Was born in Boston when hospital called Boston Lying- In, grew up outside Beantown, so much is familiar.
Good luck for your appointment.
Peanut  (Wendy)
3.5 cm AN total resection via suboccipital  April 2003 Barker & McKenna, MGH Boston one week, two weeks Spaulding Rehab
silicone punctal plugs in lower puncta for dry eye,
persistent post op head pain
Acupuncture, craniosacral treatments, Tramadol   200  reduced to 150, now 100mg. daily Feb 2007

Larry

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Re: I'm amazed at the courage here
« Reply #13 on: August 22, 2006, 09:32:40 pm »
we gotta have continued positive thought.

My appreciation of you guys has been said and will be continually said.

fantabulous.

Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Crazycat

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Re: I'm amazed at the courage here
« Reply #14 on: August 22, 2006, 09:55:44 pm »
Peanut,

   Yes, Dr. McKenna is a great guy. My appointment with him has been moved to Friday morning because he's going to be in surgery all day Thursday into the evening, probably working on another gargantuan AN!! Here's a link to his page at Mass Eye and ear:

  http://www.meei.harvard.edu/shared/staff/otodocs/mmckenna.htm

He used to visit me in the hospital quite frequently with his fellow /resident, Dr. Ron, who is also a great guy!

  We'll have Phyll organize another brunch or dinner for us to get together at, probably in Worchester again. That place, Maximillian's was really good!

Nan, did they severe your vestibular system? They told me that the opposite side would compensate over time.  I think I rememberthem saying that they left my vestibular system untouched for some reason. I'll ask Dr. McKenna on Friday.

   Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.