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Author Topic: Brief poll on conditions post-treatment  (Read 17813 times)

GRACE1

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Re: Brief poll on conditions post-treatment
« Reply #45 on: April 21, 2009, 07:01:36 am »
I have to agree with Phyl.  I did not have any major, unexpected results. 

I post here to help newbies and for future reference in case I have further problems.  Also, I keep posting because everyone is like family.

Grace
« Last Edit: April 21, 2009, 08:40:39 am by GRACE1 »
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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

stoneaxe

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Re: Brief poll on conditions post-treatment
« Reply #46 on: April 21, 2009, 01:18:28 pm »
What I think I'll do with the summary when I have enough of a sampling is to pull it together and then present it to the mods for comment before publishing here. If that works for you mods of course... ;). I'll wait another week or so to let anyone that wants to contribute have a chance.
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Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

ppearl214

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Re: Brief poll on conditions post-treatment
« Reply #47 on: April 21, 2009, 01:23:41 pm »
Let us know, Bob... in the wings to help if we can. I'd also be curious to see how it compares to the ANA Patient Survey (see my previous post) to see if the responses fall in line with their stats too.

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

Jim Scott

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Re: Brief poll on conditions post-treatment
« Reply #48 on: April 21, 2009, 02:16:58 pm »
Bob:

I agree with Steve on this.  The poll and whatever results it generates are patient perceptions, not scientific medical conclusions.  Assuming the results are presented as self-evaluations coming from self-selected post-op AN patients, this could be useful information for the newly diagnosed (aka 'newbies').   I'm curious, too and I'm happy to offer whatever help, if any, that may be needed.

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.

stoneaxe

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Re: Brief poll on conditions post-treatment
« Reply #49 on: April 23, 2009, 02:21:05 am »
I definitely want to be very careful about how this info is presented. I certainly wouldn't want anyone to look at it and think they had sufficient data to act on.
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Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

grega

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Re: Brief poll on conditions post-treatment
« Reply #50 on: April 23, 2009, 01:25:00 pm »
1. size of tumor pre-treatment     1.5 cm
2. treatment type (radio-surgery or surgery) - surgery
3. delivery method or surgical approach taken - retrosigmoid

4. balance pre-treatment (1-10) 9
5. balance post-treatment short term (3 months) (1-10) 8
6. balance post-treatment long term (1-10) 10

7. hearing pre-treatment (1-10) 8
8. hearing post-treatment short term (3 months) (1-10) - 1 (0)
9. hearing post-treatment long term (1-10) - 1 (0)

10. headache pre-treatment (1-10)  10
11. headache post-treatment short term (3 months) (1-10) 10
12. headache post-treatment long term (1-10)  10

13. Facial pre-treatment (1-10) 10
14. facial post-treatment short term (3 months) (1-10) 8
15. facial post-treatment long term (1-10) 10

16. cognitive pre-treatment (1-10) 10
17. cognitive post-treatment short term (3 months) (1-10) 10
18. cognitive post-treatment long term (1-10) 10

19. would you deem your treatment a success (1-10) 10 (tumor's gone, but so is hearing)
20. Comments - clarifications - Have tinnitus big-time at times, loss of hearing.
21. where was your treatment performed? Johns Hopkins 11/04 by Dr Henry Brem, head of neurosurgery & Dr Michael Holliday

Back to riding roller coasters and now playing with 1st grandson, so life is OK!

Thanks ... let us know "results"
 
 
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1.5 cm AN retrosig 11/04.
Drs. Henry Brem & Michael Holliday @ Johns Hopkins, Baltimore
SSD right. Tinnitus big-time, only when thinking of it.
BAHA since 7/20/10 ... really helps w/ hearing, specially after programming in subliminal message: "Hey, don't listen to your tinnitus!"

kathylittlejohncobb

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Re: Brief poll on conditions post-treatment
« Reply #51 on: April 23, 2009, 01:50:44 pm »
1. size of tumor pre-treatment 1.5-2.0 cm
2. treatment type (radio-surgery or surgery) surgery
3. delivery method or surgical approach taken  retrosigmoid

4. balance pre-treatment (1-10) 9
5. balance post-treatment short term (3 months) (1-10) 8
6. balance post-treatment long term (1-10) 9-10

7. hearing pre-treatment (1-10) 7
8. hearing post-treatment short term (3 months) (1-10) 7
9. hearing post-treatment long term (1-10) 7

10. headache pre-treatment (1-10) 8
11. headache post-treatment short term (3 months) (1-10) 8
12. headache post-treatment long term (1-10) 9

13. Facial pre-treatment (1-10) 10
14. facial post-treatment short term (3 months) (1-10) 9
15. facial post-treatment long term (1-10) 10

16. cognitive pre-treatment (1-10) 10
17. cognitive post-treatment short term (3 months) (1-10) 9
18. cognitive post-treatment long term (1-10) 10`

19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful  10
20. Comments - clarifications - Tinnitus is constant on the AN side, with varying degrees of loudness & varying noises
21. where was your treatment performed, Drs?  House Institute/St. Vincent's; doctor heroes are Marc Schwartz and Rick Friedman
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Retrosigmoid at House/St. Vincent's in Los Angeles 4-4-06; partial hearing saved on AN side;
Dr. Marc Schwartz & Dr. Rick Friedman, my heroes!

stoneaxe

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Re: Brief poll on conditions post-treatment
« Reply #52 on: May 07, 2009, 07:59:11 pm »
OK...I've given this enough time to be seen and commented on. i'll pull together the results...no schedule but sometime in the next week or two....and once done submit it to the mods for comment and editorial before I post it here. Thanks for the input all.
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Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

ixta

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Re: Brief poll on conditions post-treatment
« Reply #53 on: May 07, 2009, 08:34:56 pm »
. size of tumor pre-treatment 3.5cm
2. treatment type (radio-surgery or surgery) Surgery
3. delivery method or surgical approach taken: Endoscopic Less invasive

4. balance pre-treatment (1-10) 9
5. balance post-treatment short term (3 months) (1-10) 1
6. balance post-treatment long term (1-10) 9

7. hearing pre-treatment (1-10) 7
8. hearing post-treatment short term (3 months) (1-10) 0
9. hearing post-treatment long term (1-10) 0

10. headache pre-treatment (1-10) 1
11. headache post-treatment short term (3 months) (1-10) 4
12. headache post-treatment long term (1-10) 1

13. Facial pre-treatment (1-10) 4
14. facial post-treatment short term (3 months) (1-10) 5
15. facial post-treatment long term (1-10) 1

16. cognitive pre-treatment (1-10) 1
17. cognitive post-treatment short term (3 months) (1-10) 8
18. cognitive post-treatment long term (1-10) 2

19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful 10
20. Comments - clarifications -Doing IronMan 2010. I've never been in shape in my life until now.
21. where was your treatment performed, Drs __Dr. Shahinian Skull Base Institiute
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5cm left AN from IAC to cerebellum/brainstem.
Zapped out by Shahinian @ SBI over the course of 6.5 hrs on Monday 11/27 2006.
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ssafarik

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Re: Brief poll on conditions post-treatment
« Reply #54 on: May 11, 2009, 03:44:40 pm »
1. size of tumor pre-treatment:  2.5cm left side
2. treatment type (radio-surgery or surgery)  surgery
3. delivery method or surgical approach taken:  translab

4. balance pre-treatment (1-10) 9
5. balance post-treatment short term (3 months) (1-10) 8
6. balance post-treatment long term (1-10)

7. hearing pre-treatment (1-10) 9
8. hearing post-treatment short term (3 months) (1-10) 1
9. hearing post-treatment long term (1-10)

10. headache pre-treatment (1-10) 10
11. headache post-treatment short term (3 months) (1-10) 9
12. headache post-treatment long term (1-10)

13. Facial pre-treatment (1-10) 10
14. facial post-treatment short term (3 months) (1-10) 10
15. facial post-treatment long term (1-10)

16. cognitive pre-treatment (1-10) 10
17. cognitive post-treatment short term (3 months) (1-10) 10
18. cognitive post-treatment long term (1-10)

19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful:  10
20. Comments - clarifications -  I don't know about long-term performance yet -- surgery was one month ago.  I suspect all will be normal except zero hearing.
21. where was your treatment performed, Drs?  House clinic, Drs Slattery, Wilkinson, Schwartz
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2.3cm AN diagnosed Dec 2008.  Shopping for a surgical team.

bleavitt

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Re: Brief poll on conditions post-treatment
« Reply #55 on: May 20, 2009, 03:31:11 pm »
1. size of tumor pre-treatment:  2.0cm right side
2. treatment type (radio-surgery or surgery)  surgery
3. delivery method or surgical approach taken:  translab

4. balance pre-treatment (1-10) 9
5. balance post-treatment short term (4 months) (1-10) 8
6. balance post-treatment long term (1-10)

7. hearing pre-treatment (1-10) 4
8. hearing post-treatment short term (3 months) (1-10) 0
9. hearing post-treatment long term (1-10)

10. headache pre-treatment (1-10) 0
11. headache post-treatment short term (4 months) (1-10) 0
12. headache post-treatment long term (1-10)

13. Facial pre-treatment (1-10) 10
14. facial post-treatment short term (4 months) (1-10) 10
15. facial post-treatment long term (1-10)

16. cognitive pre-treatment (1-10) 10
17. cognitive post-treatment short term (4 months) (1-10) 10
18. cognitive post-treatment long term (1-10)

19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful:  10
20. Comments: went better then expected
21. where was your treatment performed, Drs? Providence Hospital, Dr. Kartush
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Kate B

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Re: Brief poll on conditions post-treatment
« Reply #56 on: May 20, 2009, 04:55:03 pm »
1. size of tumor pre-treatment: 1.5 cm
2. treatment type (radio-surgery or surgery): surgery
3. delivery method or surgical approach taken: middle fossa

4. balance pre-treatment (1-10): 7
5. balance post-treatment short term (3 months) (1-10): 7
6. balance post-treatment long term (1-10): 9

7. hearing pre-treatment (1-10): 10
8. hearing post-treatment short term (3 months) (1-10): 8
9. hearing post-treatment long term (1-10): 7

10. headache pre-treatment (1-10): none
11. headache post-treatment short term (3 months) (1-10): none
12. headache post-treatment long term (1-10): none

13. Facial pre-treatment (1-10): 10
14. facial post-treatment short term (3 months) (1-10): 10
15. facial post-treatment long term (1-10): 10

16. cognitive pre-treatment (1-10): 10
17. cognitive post-treatment short term (3 months) (1-10): 7
18. cognitive post-treatment long term (1-10): 10

19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful: 10
20. Comments - clarifications : treatment was 7 years ago in 2001.  Just this past year, I would reduce my hearing from 8 to 7 but then I am a wee bit older too:-)
21. where was your treatment performed: House Ear  (Drs. Brackmann and Hitselberger)
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Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

AMD

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Re: Brief poll on conditions post-treatment
« Reply #57 on: May 20, 2009, 09:04:22 pm »
1. size of tumor pre-treatment: 1.7 cm on MRI, turned to be bigger, more like 2-2.5 cm
2. treatment type (radio-surgery or surgery): surgery
3. delivery method or surgical approach taken: sub-occipital

4. balance pre-treatment (1-10): 7
5. balance post-treatment short term (3 months) (1-10): 5
6. balance post-treatment long term (1-10): 8

7. hearing pre-treatment (1-10): 1
8. hearing post-treatment short term (3 months) (1-10): 0 (n/a)
9. hearing post-treatment long term (1-10): 0(n/a)

10. headache pre-treatment (1-10): 9
11. headache post-treatment short term (3 months) (1-10): 9
12. headache post-treatment long term (1-10): 9

13. Facial pre-treatment (1-10): 10
14. facial post-treatment short term (3 months) (1-10): 8
15. facial post-treatment long term (1-10): 9

16. cognitive pre-treatment (1-10): 10
17. cognitive post-treatment short term (3 months) (1-10): 9
18. cognitive post-treatment long term (1-10): 10

19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful: 10
20. Comments - clarifications : facial issues and complications were the result of a rare positioning problem, unrelated to the tumor removal itself.  so, i am basing success on tumor removal.
21. where was your treatment performed, Drs? Indianapolis University Hospital (indianapolis, IN)  Drs. Pritz and Miyamoto
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Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.

linny

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Re: Brief poll on conditions post-treatment
« Reply #58 on: June 05, 2009, 01:35:06 am »



View Profile WWW Personal Message (Offline)
   
   
Brief poll on conditions post-treatment
« on: April 16, 2009, 12:24:43 AM »
   Reply with quote
I'd like to get some research from this so I'm hoping for direct short answers and an on topic thread. I'm looking for brief answers to conditions post treatment for surgery and radio-surgery along with details of what treatment approach was taken. For those that would like to participate here are the questions (all numbered answers will be on a scale of 1-10 with 10 being normal, 1 being abnormal or bad.

I realize this is an unscientific survey but I think much of our decision making is made from all the disparate discussion that are had here. I'm attempting to bring them together into a easier to scan format. Please try to refrain from hijacks..thanks. I simply listed all the issues on the forum under post-treatment...if you think I'm missing something let me know.

1. size of tumor pre-treatment ----3cm
2. treatment type (radio-surgery or surgery)---- surgery
3. delivery method or surgical approach taken----  two surgeries

4. balance pre-treatment (1-10) ------5
5. balance post-treatment short term (3 months) (1-10)--------9-
6. balance post-treatment long term (1-10)-------6

7. hearing pre-treatment (1-10) --8
8. hearing post-treatment short term (3 months) (1-10)--have none on left side ( A N )
9. hearing post-treatment long term (1-10)---none

10. headache pre-treatment (1-10)---9
11. headache post-treatment short term (3 months) (1-10)---8
12. headache post-treatment long term (1-10)--- occasionally--5

13. Facial pre-treatment (1-10) ===== 1
14. facial post-treatment short term (3 months) (1-10)---   10
15. facial post-treatment long term (1-10)---------10

16. cognitive pre-treatment (1-10)---  4
17. cognitive post-treatment short term (3 months) (1-10)-----8
18. cognitive post-treatment long term (1-10)

19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful---as far as tumor removal yes
20. Comments - clarifications -
21. where was your treatment performed, Dr?mcmename. Delashaw, at OSUH portland oregon        ::)
I
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Linda-2yr post AN 3-cm left side.  OHSU hospital , slow recovery for me. But then I had to have 2 surgeries with complications swelling of brain,

stoneaxe

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Re: Brief poll on conditions post-treatment
« Reply #59 on: June 07, 2009, 09:24:14 pm »
Sorry everybody...i've been meaning to get to this. I still haven't found the time. My list of things to get done before surgery is growing faster than I can get items crossed off. I'll have a few weeks of down time shortly....definitely then.... ;D
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Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org
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