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Archive => Archives => Topic started by: nannettesea on August 19, 2006, 10:11:30 pm

Title: I'm amazed at the courage here
Post by: nannettesea 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
Title: Re: I'm amazed at the courage here
Post by: tony 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
Title: Re: I'm amazed at the courage here
Post by: Gennysmom 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
Title: Re: I'm amazed at the courage here
Post by: matti on August 20, 2006, 12:02:15 pm
Luv Ya DD!

Title: Re: I'm amazed at the courage here
Post by: Crazycat 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
Title: Re: I'm amazed at the courage here
Post by: Peanut 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
Title: Re: I'm amazed at the courage here
Post by: Captain Deb 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)
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U No Hoo! 8)
Title: Re: I'm amazed at the courage here
Post by: ppearl214 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
Title: Re: I'm amazed at the courage here
Post by: Captain Deb on August 21, 2006, 12:55:10 pm
Chasin' ya around, Phyll!
Capt Deb P-)
Title: Re: I'm amazed at the courage here
Post by: Crazycat 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
Title: Re: I'm amazed at the courage here
Post by: nannettesea 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)
Title: Re: I'm amazed at the courage here
Post by: Captain Deb 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)
Title: Re: I'm amazed at the courage here
Post by: Peanut on August 22, 2006, 07:02:59 pm
Quote from: Crazycat 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

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)
Title: Re: I'm amazed at the courage here
Post by: Larry 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
Title: Re: I'm amazed at the courage here
Post by: Crazycat 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
Title: Re: I'm amazed at the courage here
Post by: ppearl214 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

Quote from: Crazycat 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
Title: Re: I'm amazed at the courage here
Post by: krbonner on August 23, 2006, 06:35:18 am
Quote from: ppearl214 on August 22, 2006, 10:36:04 pm
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
Title: Re: I'm amazed at the courage here
Post by: ppearl214 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


Quote from: krbonner on August 23, 2006, 06:35:18 am
Quote from: ppearl214 on August 22, 2006, 10:36:04 pm
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
Title: Re: I'm amazed at the courage here
Post by: nannettesea 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)
Title: Re: I'm amazed at the courage here
Post by: msuscottie 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.
Title: Re: I'm amazed at the courage here
Post by: Peanut 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
Title: Re: I'm amazed at the courage here
Post by: Crazycat 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
Title: Re: I'm amazed at the courage here
Post by: Peanut 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