Author Topic: I'm amazed at the courage here  (Read 12431 times)

ppearl214

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Re: I'm amazed at the courage here
« Reply #15 on: August 22, 2006, 10:36:04 pm »
Nothing like the Boston Medical community! :)  Will organize next brunch.. was thinking end Oct/Beginning November...

Great team at MGH... nothing but the best!

Phyl

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
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

krbonner

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Re: I'm amazed at the courage here
« Reply #16 on: August 23, 2006, 06:35:18 am »
Nothing like the Boston Medical community! :)  Will organize next brunch.. was thinking end Oct/Beginning November...

I'm all up for a fall brunch again!  I'm sure I'll need the pick-me-up right about then.   ;D

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

ppearl214

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Re: I'm amazed at the courage here
« Reply #17 on: August 23, 2006, 07:05:17 am »
Nan, don't want to hijack your thread, so will carry this to a different thread.
Hang in there DD! We luffs ya!
xoxooxo


Nothing like the Boston Medical community! :)  Will organize next brunch.. was thinking end Oct/Beginning November...

I'm all up for a fall brunch again!  I'm sure I'll need the pick-me-up right about then.   ;D

Katie
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

nannettesea

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Re: I'm amazed at the courage here
« Reply #18 on: August 23, 2006, 10:11:31 am »
No prob, Pearly.

Crazycat, yes, they annihilated my inner ear, supposedly nothing left.  Can't imagine you have much left either with size of your tumor.

I don't think it's vestibular system at this point, but neuro system not compensating like it should.
Thanks for asking,
DD (aka Nan)
1.7cm x 1.4cm x .8cm, right ear
Trans-lab approach
Dr. Jay Rubinstein, U of WA
8/29/05

msuscottie

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Re: I'm amazed at the courage here
« Reply #19 on: August 23, 2006, 10:29:21 am »
Great Post Nan,

The great thing about this board is how we can relate to one and other. In the "Real" world, I kind of feel like I was just thrown back in to the mix as if nothing happened. I guess this can be good at times, but at other times I wish someone knew what I went through on a daily basis and how frustrating it can to perform simple tasks at times. Single-sided hearing is a whole other monster that those damn double-side hearers will never understand  ;)  How many times have you had someone whisper in to your bad ear and you just smile and nod? I do it everyday. Everyone that goes through this, or any other illness is indeed courageous. There's a Rob Thomas song that was on my iPod when I was in the hospital and one of the lyrics is "Can't you help me I'm bent, I'm so scared that i'll never, get put back together," which was an accurate description of how I often feel. Not broken, but "bent." I've always kind of lived by the philosophy "when life knocks you down, get your ass up go back for more," and the fact that we're all here supporting each other is proof that we're back and as strong as ever, even if our bodies might not agree.

Thanks again for the post.

Peanut

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Re: I'm amazed at the courage here
« Reply #20 on: August 23, 2006, 01:35:06 pm »
Thanks, Paul.  Just as I thought, no email.  So would you ask him, please?  I  saw him much more in his office than in hospital.  It's the follow up....how to provide better links to our  PCPs, who do not necessarily know so much about aftercare of ANs, who can easily miss cues therefore. I , for one, couldn't stand being at the computer for months afterwards and so didn't have access to the wealth of information.  But after all, I didn't go to med school or go through an internship, residency, specialization fellowship either--it's getting out of hand for the patients to have tell the doctors, in my opinion.
Hope to meet you this fall one way or another. Which town are you in? I forget.
McKenna is better than his picture there, no?  Such a fine human being.  Woops, perhaps I should use another thread, which?  Still learning. 

Yes, Nan, courage in bundles.  I am amazed too, but then what choice did/do we have?? And Patience, our patron saint.  I used to say that when I lived in Italy and heard reference to la santa pazienza...
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

Crazycat

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Re: I'm amazed at the courage here
« Reply #21 on: August 24, 2006, 12:33:33 pm »
Peanut,

          I live in BIllerica. Do you want me to try to obtain an e-mail address for Dr. McKenna? I'll see what I can do.
When was your last MRI? Just curious. I know your surgery was in 2003.

       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 #22 on: August 24, 2006, 10:30:24 pm »
Paul,
Thanks for reminding me, yes, Billerica.  I blush to tell you I've never been there, either (Wakefield is same story, heard of for years, never been)  YES, please do find out about MJM's email.  Hope your appointment is all you wish and traffic is OK.  My son is returning from Rome just before five.  I still can't tell when the headpain fairy/demon may strike so someone else is picking him up and bringing him to NH.

I've started spending more time reading posts here, and apart from trouble with the size and visibility of this "post reply" screen in the composing phase and staying up way too late, I really appreciate knowing of others with some long journeys, for as Nan says, there is courage in keeping on especially when others just do not realize at  all what we're up against.

so, way too late, Good night.

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