Author Topic: This Week 8/3 In the Ever Capricious AN World  (Read 11678 times)

Debbi

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Re: This Week 8/3 In the Ever Capricious AN World
« Reply #15 on: August 04, 2008, 12:17:00 pm »
David-

Not to cast to dark a pall on the MRI - but I have a friend from South America who believes that the MRI "sucks the spirits" from your body...  And, that, my friends, is why God allowed someone to invent Valium!!!  It is actually a demon-spirit-sucking shield...

David, sending you LOTS of good wishes tomorrow!!!

Debbi
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

LADavid

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Re: This Week 8/3 In the Ever Capricious AN World
« Reply #16 on: August 04, 2008, 01:46:29 pm »
You like MRIs, Kay :o?  I guess that is a different perspective.  I have all the peace I want (at least when the neighbors are quiet).  And maybe I should look into this valium thing.  I was thinking a shot of brandy would do the trick.  But I'm guessing St Vincents radiology department would frown on that.

But now I am really concerned, a spirit sucking tube?  Thanks for the warning Debbie.  I'll mention that to the radiologist and see what he can do about it.
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

leapyrtwins

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Re: This Week 8/3 In the Ever Capricious AN World
« Reply #17 on: August 04, 2008, 11:51:19 pm »
OMG, a spirit-sucking tube  :o  I hope this comment didn't freak you out David.

And, I'd vote for brandy over valium any time.  Or maybe rum would be a little more appropriate in light of the whole "pirate thing"  ;)

Best of luck tomorrow.  I'll be thinking about you.

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

Lamsue23

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Re: This Week 8/3 In the Ever Capricious AN World
« Reply #18 on: August 05, 2008, 01:39:29 pm »
Well here I am at the Norwich Inn in Vermont which is just 5 mi from the Darthmouth-Hitchcock Medical Center in Lebanon, NH where I will have my surgery at 6am in the morning.  My daughter from AZ is here with me and were checking our email etc... while waiting for my daughter from NY to arrive.

I'm very calm, and I know it's because I know all my information from all of you.......I will be coming out of this with flying colors.  We are going to have a nice dinner together here at the Inn.   Maybe kill that bottle of wine!!!! ;)

Steve will be updating you as soon as my daughter gets the email out to everyone.  Take care!

Nancy, good luck to you, I will be praying for you while I'm under, I'll have plenty of time........

SueL/NH
SueL/from NH
Retrosigmoid Surgery 8/6/2008 DHMC, Lebanon, NH 7.5 hrs.
Dr. Erkmen - neurosurgeon
Dr. Morrisson - neuro-ostology
Loss of hearing 70% in left ear.
Vision and Balance issues...Taste!!

Kaybo

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Re: This Week 8/3 In the Ever Capricious AN World
« Reply #19 on: August 05, 2008, 01:46:24 pm »
Good Luck Sue - you are in my thoughts and prayers!  Peace to you and your family!

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!

Jim Scott

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Re: This Week 8/3 In the Ever Capricious AN World
« Reply #20 on: August 05, 2008, 02:31:12 pm »
Sue L. - 

I wish you a totally successful surgery and a flawless recovery.  My prayers go with you..

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Jackie

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Re: This Week 8/3 In the Ever Capricious AN World
« Reply #21 on: August 05, 2008, 05:29:16 pm »
Hi Everyone,

Results are in and I am still trying to figure out what's going on! My MRI shows virtually very minute difference in the growth of the An on the right side, and the 5MM mass is not in the IAC, hasn't changed either, which is all the good news but now they have found an Anuerysm in the middle of my brain. So now I am back to research, and quite frankly don't know what to do. I am to monitor all of it, have no symptoms of the Aneuysm, as of yet. So that's it for now, good news followed by bad news! So now I think my tagline needs to be Watch and wait and what's next???? I really am tired of the surprises!!!
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???

Kaybo

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Re: This Week 8/3 In the Ever Capricious AN World
« Reply #22 on: August 05, 2008, 06:24:14 pm »
Jackie!
Oh my goodness - you are definitely in my thoughts and prayers.

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!

Kate B

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Re: This Week 8/3 In the Ever Capricious AN World
« Reply #23 on: August 05, 2008, 07:31:33 pm »
David,

How was your appt with Dr.Stephan today? 

I take it your spirits are still intact afte the MRI. Keeping fingers crossed and wondering what the heck they mean by something isn't right.

Jackie,
I don't know much about aneurysms.  Is that something they just wait and watch?
It sounds like the AN isn't changing much.  Did you know that you can get a written copy of the radiologists report in the medical records department of the hospital?  I always get a copy for my records.

Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Kate B

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Re: This Week 8/3 In the Ever Capricious AN World
« Reply #24 on: August 05, 2008, 09:00:11 pm »
Jackie and David -

after reading your posts, you've got me thinking I should book a trip to Portland soon - it sounds like a lovely place.


Jan,
I've not been to Portland yet so I can't add to that one, but if you do a Pacific NW trip include Vancouver (Canada) and Seattle.

Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

LADavid

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Re: This Week 8/3 In the Ever Capricious AN World
« Reply #25 on: August 05, 2008, 10:32:51 pm »
Kate
I totally concur.  Seattle and Vancouver are fantastic.  It's funny though, when I think of trips to the Northwest I think of mist and the best salmon I've ever eaten.  Just like I think of pizza when I think of Chicago.  After 25 years of travelling, it's amazing what sticks with you.

And everybody who wanted to know
The MRI tube of gloom was OK.  Although I did try to understand how Kay found it an escape.  I do think when you do it the second time, it isn't as bad cuz you know what to expect.  So I did the spirit sucking thing and I hustled across the street to see Dr Stefan.  I had my films for Dr Slattery with me and Dr Stefan took a look at them and saw nothing.  Dr Slattery will be the final judge on this one but it seems like there is nothing physically wrong with my brain, I'm just crazy.  Of course there is my daughter's diagnosis -- my brain just didn't like getting messed with and didn't take kindly to it -- so it's getting back at me and went into pout mode.

But I had the greatest afternoon in a long time.  I went back across the street to meet Kathleen and her husband.  She looks fantastic.  Not long after that, Nancy (NL) joined us.  She had a pre-op meeting with Dr Stefan.  Her Retro is tomorrow.  Wow, it was very cool.  After reading about how all you got together in the Northeast and Texas, we west-coasters bonded.  (Lainie, you're in on the next get together -- maybe when Nancy is freed from captivity).  It was the first time I met a real ANer in person.  So now I'm rethinking my ethnic based theory.  I'm now thinking that ANs are caused by the really beautiful people gene that comes from the heart.  Nancy got some pictures.  I'm hoping that she posts them as a postie.  Wishing you the best tomorrow, Nancy.  Wow, what a day!

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

leapyrtwins

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Re: This Week 8/3 In the Ever Capricious AN World
« Reply #26 on: August 05, 2008, 10:40:12 pm »
Kate -

thanks for the travel tip - I'm dying to see Seattle also.  While I know I'll be sad when the kids go off to college - still about 6 years away - I'm looking forward to some "me" time where I can travel  ;D

David -

sounds like you've got your own little support group going.  Good for you - and all the others who joined you.

Glad the spirit sucking tube adventure is over, but I'm puzzled by the results.  With the issues you are having, it seems logical that there should be something behind them.  Maybe your daughter is right about the pout mode.

Jackie -

The good news is definitely good, but I'm sorry you had bad news also.  I'm not sure what to say other than hang in there.   Like Kate, I don't know much about aneurysms.  Is monitoring it your only option?  And how does one monitor an aneurysm if one doesn't have any symptoms?

Sue -

your calmness and your wonderful positive attitude will be great assets tomorrow and in the days and weeks to come.

Best wishes for a swift surgery and uneventful recovery.  I'll be anxiously awaiting Steve's post telling us you are in postie land  :)

Jan
« Last Edit: August 05, 2008, 10:46:19 pm by leapyrtwins »
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

Cheryl R

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Re: This Week 8/3 In the Ever Capricious AN World
« Reply #27 on: August 06, 2008, 08:14:08 am »
Hi Jackie,       Good to hear about no change in the tumors but of course scary to hear of the aneurysm.                    That may be a wait and watch also but will depend on the size and its location also.         Sometimes surgery is done and  the artery/vein is clipped off so that it does not burst and cause bleeding.                    It is a major in the brain surgery but can be fine past recovery.
 I had a sister in law just a year before my first AN surgery did have one burst and had to have immediate surgery.       Her father had had one also but am not sure how he did as was before we even knew her.                  She did recover well but took some time.        She had no idea that she even had one and think it was fairly big.               Her daughter has since had an MRI to see if she has one and does not.     
      I know it is not fun to have to be concerned about one more thing  and know we get more and more MRI's.                           
                Good luck with this.                         Cheryl R
                               
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Jim Scott

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Re: This Week 8/3 In the Ever Capricious AN World
« Reply #28 on: August 06, 2008, 12:59:22 pm »
David:

I'm pleased to learn that you survived the dreaded MRI spirit-sucker experience .  If it's any consolation, I've undergone eight MRI scans in 26 months and my spirit is still intact.  ;)  I'm even more pleased to learn that the MRI showed no real problem.  Whew!  You had us worried there, for awhile.

It was great that you were able to meet Kathleen and her husband as well as Nancy L.   Having attended one of Phyl's New England-area brunches, meeting other ANers as well as enjoying good food and conversation in the bargain, I can understand your positive impressions. 

Thanks for sharing your great day with us.  :)

Jim
« Last Edit: August 07, 2008, 01:51:14 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Debbi

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Re: This Week 8/3 In the Ever Capricious AN World
« Reply #29 on: August 06, 2008, 01:08:11 pm »

David- So glad you got to meet Kathleen and Nancy L!  I really enjoyed meeting some of my fellow-ANers face to face reacently and am commited to doing it again, and again, and again.  You're right - the common denominator must be that we are all really great people! 
Very good news about your MRI!

Jackie - I hope you'll find out more about this aneurysm thing - I don't know much about them either, except that they aren't good.  Keeping you in my prayers...

Debbi
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

 


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