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Author Topic: Torture . . .  (Read 6367 times)

NancyMc

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Torture . . .
« on: February 17, 2009, 08:51:25 am »
So, I happened to call one of the surgeons' offices this morning, nine days before my scheduled translab procedure, and the receptionist asks BTW if I am aware that my surgery date has been moved.  What?!?!?!?!?  I had planned to make the four-hour round trip to Boston on Monday for MRI, chest xray, and bloodwork as well as office visit with neurosurgeon to sign consent and then return on Thursday evening for Friday's surgery.  I had housing arrangements for me and my friend who will be visiting me daily in the hospital.  He scheduled his work around my schedule.  The receptionist said that tentatively my surgery is planned for April 8, just a month before I was planning to fly to Scotland for my son's 21st birthday, but they might be able to move it up to March 13, my mother's 90th birthday when my brother and his wife are flying up from Texas to surprise her and stay with me.  She hopes to have a date by the end of this week, but that could change as well.  Maybe I should just put myself back on wait and watch.
Can you tell I'm a control freak?
Will I ever be a postie?  :'(
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

Kaybo

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Re: Torture . . .
« Reply #1 on: February 17, 2009, 08:57:55 am »
Oh Nancy...that is terrible - I am so sorry!!
 :-[
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!

GRACE1

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Re: Torture . . .
« Reply #2 on: February 17, 2009, 09:14:03 am »
Bummer!!!  I wonder when they were going to tell you.

Grace
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Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

cindyj

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Re: Torture . . .
« Reply #3 on: February 17, 2009, 09:23:00 am »
So sorry, Nancy.  How disappointing - got yourself all psyched up and everything planned for the big day, and then they cancel on you.  Unfortunately, this does happen fairly often, but I'm with Grace, wonder when they were going to tell you.  Good thing you called!

Let us know how things work out,

Cindy
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rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Jwh

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Re: Torture . . .
« Reply #4 on: February 17, 2009, 09:23:37 am »
That is torture  >:(  My first surgery in 2001 was changed by one day and I broke down in tears!!  I recently had another surgery, Translab, on 1/26 got a cold 5 days before and almost had a meltdown thought it would have to be rescheduled.  Luckily, I was well enough to go thru with the surgery. Sooo sorry to hear about your surgery being rescheduled I can truly sympathize with that.  Keep us posted on the new date :-[ :-[

Jen
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5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

Sue

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Re: Torture . . .
« Reply #5 on: February 17, 2009, 11:56:58 am »
It seems that doctors do things for their convenience, not the patient.  It doesn't even seem to occur to them that changing the date would be a major inconvenience for you,  your family, the plans that you've already made, or anything else pertaining to your surgery.  That's highly inconsiderate of them.  I do hope it all works out beautifully for you, in the end.

Don't you wish you could just smack 'em sometimes, though!

Sue in Vancouver USA
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Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

GRACE1

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Re: Torture . . .
« Reply #6 on: February 17, 2009, 11:59:02 am »
Smacking would be good!

Grace
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Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

lori67

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Re: Torture . . .
« Reply #7 on: February 17, 2009, 12:09:57 pm »
Nancy -

That is awful!  Don't they realize that people have to plan ahead for these things?  It's not like we can all drop everything and swing by to have brain surgery.  Did you tell them about the arrangements you had already made?  They may not do anything about it,but maybe they'll at least feel bad and think before they do this to someone else.

And if that doesn't work, I second the smacking thing.

Lori
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Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

NancyMc

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Re: Torture . . .
« Reply #8 on: February 17, 2009, 12:37:57 pm »
I love it!  "Swing by to have brain surgery!"  Oh, I told them how they've screwed up my life alright.  I'm going for a long walk to clear my head and regroup.
Now this is what I call a support group.
Thanks, Every One of You!
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

saralynn143

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Re: Torture . . .
« Reply #9 on: February 17, 2009, 01:17:46 pm »
Did they give you a reason? My surgery was scheduled for first thing on a Monday morning and they told me if there was a rough weekend (this was in Detroit) with gunshot wounds to the head, etc. I might be bumped, but yours is a different thing altogether.

I'm very sorry for your delay and the scheduling conflicts it has caused. Maybe if they can't reschedule sooner than April you should wait until after your trip to visit your son?

Sara
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MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
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NancyMc

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Re: Torture . . .
« Reply #10 on: February 17, 2009, 01:33:32 pm »
Sara,
They said that someone with more urgent need displaced me.  I would love to wait until next winter, but I'm concerned that my tumor is growing rapidly.  There was virtually no growth for the six years since diagnosis, and then in the seventh year it doubled in size.  It has pushed the canal open.  I'm concerned that it might be starting to stick to or become entangled in places where it is not now.  But then I worry a lot.   There is the chance that my insurance could be terminated as well.
Whatever.  It could always be worse.
Thanks for your commiseration.
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

suboo73

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Re: Torture . . .
« Reply #11 on: February 17, 2009, 02:04:48 pm »
Hi Nancy.  I am so sorry to hear your surgery is being rescheduled - wow, surely they must realize this takes a team effort (for recovery.)  No-maybe they DON'T realize that part! (Seems to be much evidence of that here on the forum.)  -- My younger sister had hip replacement surgery and we had the whole family helping.  Then, she did it 2 more times from bad hardware (!)  She really started asking 'hard' questions and trying to control her own outcome as much as possible.  So i don't blame you a bit for feeling the same way! 

I worry about growth myself; but not half as much as my insurance being terminated (or losing my job so it is terminated.)  I really am considering treatment soon after the 6 month MRI follow-up, so i can stop worrying about these things.  It is stressful. 

So know that you are not alone and feel free to vent anytime! 
As for delays - my first child was to be taken C-section on a Monday - oops, they called me at 5:00am and said , '...no room at the 'inn', please come back tomorrow.'  She was finally born on Wednesday afternoon!

Sue
PS  My mom just turned 80 years old on Jan 1st and we had a BD lunch with 4 of 5 children present, plus nephews and nieces and their spouses.  I would tell the surgeons office 'please schedule me on March 14th or 15th' - and then enjoy the day with your mom and family!
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suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

elliemae

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Re: Torture . . .
« Reply #12 on: February 17, 2009, 02:49:28 pm »
Ow, Nancy ...
I'm really sorry to hear about this scheduling mess.  I hope it works out soon, and in your favor!
Once you've made your decision and are all prepared for it, it's hard to delay.  I agree with Sara, maybe you could wait until after your visit with your son?

Elaine
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Jim Scott

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Re: Torture . . .
« Reply #13 on: February 17, 2009, 04:40:29 pm »
Nancy ~

The surgery scheduling shuffle you've had to deal with is obviously exasperating and clearly inconsiderate of the doctors/hospital involved.  My surgery situation was just the opposite.  My neurosurgeon was very anxious to operate and only a cancer scare (that, thankfully, turned out to be a false alarm) forced a delay for another week because he had to re-reserve an OR as well as reschedule his entire surgery team.  I had no big plans and just went with it.  Fortunately, it all turned out well.  I wish you the same when you finally undergo your surgery.

Jim
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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.

Sue

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Re: Torture . . .
« Reply #14 on: February 17, 2009, 04:56:33 pm »
Maybe it's not so much that they changed the date, it just sounded like they had an "oh, by the way..." kind of attitude that sort of irritates you.  It almost sounded like you would have shown up for your surgery and they would have looked at you blankly and said, "Oh, didn't you get the memo?"  That kind of thing..... ;)

Hang in there,

Sue in Vancouver

PS
Lori, you made me laugh too.  Swing by for brain surgery..  hee hee ;D

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Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode
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