Author Topic: Brief poll on conditions post-treatment  (Read 17799 times)

jazzfunkanne

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Re: Brief poll on conditions post-treatment
« Reply #30 on: April 17, 2009, 08:27:20 am »
. size of tumor pre-treatment 4,5cm
2. treatment type (radio-surgery or surgery) surgery
3. delivery method or surgical approach taken

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

7. hearing pre-treatment (1-10) 6
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) 0
11. headache post-treatment short term (3 months) (1-10) 0
12. headache post-treatment long term (1-10) 0

13. Facial pre-treatment (1-10) 10
14. facial post-treatment short term (3 months) (1-10) grade 6
15. facial post-treatment long term (1-10) grade 2

16. cognitive pre-treatment (1-10)
17. cognitive post-treatment short term (3 months) (1-10)
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 8
20. Comments - clarifications -
21. where was your treatment performed, Drs? glasgow
 
 
« Last Edit: April 16, 2009, 01:02:01 AM by stoneaxe »  Report to moderator    Logged 

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over 4.5cm AN removed dec 06

EJTampa

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Re: Brief poll on conditions post-treatment
« Reply #31 on: April 17, 2009, 09:09:35 am »
1. size of tumor pre-treatment  1.3 cm
2. treatment type (radio-surgery or surgery) surgery
3. delivery method or surgical approach taken retrosigmoid

4. balance pre-treatment (1-10) 10
5. balance post-treatment short term (3 months) (1-10) 7
6. balance post-treatment long term (1-10) not there yet

7. hearing pre-treatment (1-10) 8
8. hearing post-treatment short term (3 months) (1-10) 1
9. hearing post-treatment long term (1-10) not there yet

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)

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) 8
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) 9
20. Comments - clarifications - I have light headedness issues turning my head or with an up/down motion.  Not really balance related, so doesn't fit a category here.
21. where was your treatment performed, Drs? Tampa General Hosptial.  Dr. Bartels and Dr. Danner.  http://www.tampabayhearing.com/
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

Seal

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Re: Brief poll on conditions post-treatment
« Reply #32 on: April 18, 2009, 09:27:37 am »
Great idea. I was going to do something like this, but this is outstanding.

1. size of tumor pre-treatment   ---  2.1cm X 2.2cm
2. treatment type (radio-surgery or surgery) ----  surgery
3. delivery method or surgical approach taken --- retrosigmoid

4. balance pre-treatment (1-10)  --- 5 maybe less
5. balance post-treatment short term (3 months) (1-10) ---- 5  plus after four days already better
6. balance post-treatment long term (1-10)  ----   doctors expect a full recovery at of near 100%

7. hearing pre-treatment (1-10)  ---- less than a 2
8. hearing post-treatment short term (3 months) (1-10) ---- zerio
9. hearing post-treatment long term (1-10)  ---  zero

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 (meaning good)
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) ---  8
17. cognitive post-treatment short term (3 months) (1-10) ---- 7 right now (five days postop)
18. cognitive post-treatment long term (1-10)  ---  should be at 10

19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful -----  10 plus
20. Comments - clarifications -  I do have tongue numbness left that should subside slowly as everything heals
21. where was your treatment performed, Drs? ---   Drs. McKenna & Barker -   MGH/HEEI

[/quote]
« Last Edit: April 18, 2009, 09:38:59 am by Seal »
Diagnosed 1/14/09 - 2.4cm AN right side --- about 70% cycstic
Retrosigmoid wiih McKenna & Barker - total removal successful on April 13th. 
Issues: balance, facial & mouth numbness, hearing loss right side
Results:   numbness gone, balance is good, SSD right side. Great results.

salamander

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Re: Brief poll on conditions post-treatment
« Reply #33 on: April 18, 2009, 02:47:57 pm »
1. size of tumor pre-treatment - 2.9 CM
2. treatment type (radio-surgery or surgery) - Surgery
3. delivery method or surgical approach taken Suboccipital

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

7. hearing pre-treatment (1-10) 7 (right side)
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) 9
11. headache post-treatment short term (3 months) (1-10) 2
12. headache post-treatment long term (1-10) 4

13. Facial pre-treatment (1-10) 10
14. facial post-treatment short term (3 months) (1-10) 0
15. facial post-treatment long term (1-10) 0, still hoping 5 months out

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) 9

19. would you deem your treatment a success (1-10) 10
20. Comments - clarifications - very successful because the tumor is gone.  Still adjusting the the new me.  I'm alive and greatful.
21. where was your treatment performed, Drs? Mayo, Link & Driscoll
2.9 cm right side AN;
Retrosigmoid/Sub-occipital surgery 11/08;
SSD(w/tinnitus), facial weakness, dry eye, eye weight, headaches.
Some movement of face at 7 months

Jeanlea

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Re: Brief poll on conditions post-treatment
« Reply #34 on: April 18, 2009, 08:38:34 pm »
1. size of tumor pre-treatment - 3.5 cm
2. treatment type (radio-surgery or surgery) surgery
3. delivery method or surgical approach taken- translab

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

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) 1
15. facial post-treatment long term (1-10) 7

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 is very successful 1 not successful  10
20. Comments - clarifications -  tumor's gone, so it's successful; I've adjusted to face and SSD
21. where was your treatment performed, Drs? Milwaukee Medical College-Froedert Memorial Drs. Friedland and Meyers
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

anissa

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Re: Brief poll on conditions post-treatment
« Reply #35 on: April 18, 2009, 10:53:56 pm »
1. size of tumor pre-treatment  2.1x1.8x1.9 cm
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) 7
6. balance post-treatment long term (1-10) not there yet

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) 10
11. headache post-treatment short term (3 months) (1-10) 9
12. headache post-treatment long term (1-10) not there yet

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) 8
18. cognitive post-treatment long term (1-10) not there yet

19. would you deem your treatment a success (1-10) 10
20. Comments - clarifications - I have light headedness issues turning my head or with an up/down motion.  Not really balance related, so doesn't fit a category here.
21. where was your treatment performed, Drs? University of Utah Med Ctr., Drs. Shelton and Couldwell
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

Tamara

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Re: Brief poll on conditions post-treatment
« Reply #36 on: April 19, 2009, 02:25:57 pm »
I'll play too...are you going to summarize this eventually?

1. size of tumor pre-treatment - 7 mm
2. treatment type (radio-surgery or surgery) - surgery
3. delivery method or surgical approach taken - translab

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

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

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) - 5
15. facial post-treatment long term (1-10) - 7

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 is very successful 1 not successful  - 9
20. Comments - clarifications - Successful in that I don't have a tumor in my head anymore, but could have done without the CSF leak and surgery to fix that
21. where was your treatment performed, Drs? Waukesha Memorial Hospital, Waukesha, WI, Drs. Steven Harvey and Kenneth Riekert

Tamara

[/quote]
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

Keri

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Re: Brief poll on conditions post-treatment
« Reply #37 on: April 19, 2009, 09:15:35 pm »
 1. size of tumor pre-treatment  15 or 16 mm
2. treatment type (radio-surgery or surgery) - surgery
3. delivery method or surgical approach taken - translab

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

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

10. headache pre-treatment (1-10)  9 just a few occassional headaches
11. headache post-treatment short term (3 months) (1-10) 4 some killer headaches for the first few weeks
12. headache post-treatment long term (1-10) at almost 3 months, they're pretty much gone

13. Facial pre-treatment (1-10) 10
14. facial post-treatment short term (3 months) (1-10) 4
15. facial post-treatment long term (1-10) expecting full recovery, just slow!

16. cognitive pre-treatment (1-10) 10
17. cognitive post-treatment short term (3 months) (1-10) 8
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 - glad it's gone; facial issues are improving; i feel pretty good!
21. where was your treatment performed? Univ of MD in Baltimore; Dr Eisenmand and Dr Eisenberg

1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

stoneaxe

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Re: Brief poll on conditions post-treatment
« Reply #38 on: April 20, 2009, 11:42:10 am »
Tamara asked if I planned on summarizing this eventually. I'm not sure if thats a good idea. I don't want folks looking for answers to look at this as scientific data...this is very subjective obviously. On the other hand...it's how folks feel that counts....not what some dry medical definition of what success is.

What do you folks think...is a summary a good thing...worthwhile? If I do it I'll break it down by a range of tumor sizes, treatment type and approach and give averages for the responses. I think I'll want to wait for a little larger sample too.
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

Jim Scott

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Re: Brief poll on conditions post-treatment
« Reply #39 on: April 20, 2009, 02:49:31 pm »

What do you folks think...is a summary a good thing...worthwhile? If I do it I'll break it down by a range of tumor sizes, treatment type and approach and give averages for the responses. I think I'll want to wait for a little larger sample too.

My inclination is that you should do exactly what you stated.  Wait for a slightly larger sample size, break it down (tumor size/treatment type/averages) and make it abundantly clear that the summary is not scientific but simply an indicator based on AN post-operative results form a small sampling of our members.  That would be both factual and effective.  Well, it works for me.  :)

Jim
« Last Edit: April 21, 2009, 02:06:32 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.

Tamara

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Re: Brief poll on conditions post-treatment
« Reply #40 on: April 20, 2009, 03:01:39 pm »

What do you folks think...is a summary a good thing...worthwhile? If I do it I'll break it down by a range of tumor sizes, treatment type and approach and give averages for the responses. I think I'll want to wait for a little larger sample too.

My inclination is that you should do exactly what you stated.  Wait for a slightly larger sample size, break it down (tumor size/treatment type/averages) and make it abundantly clear that the summery is not scientific but simply an indicator based on AN post-operative results form a small sampling of our members.  That would be both factual and effective.  Well, it works for me.  :)

Jim

Also, keep in mind that we are likely a skewed group ( ;)) in that those who post are those more likely to have or have had difficulties.  There ARE multiple exceptions to this generality, our Jim included, but I would still postulate that most of the folks here are here because they've had issues.

Tam
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

ppearl214

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Re: Brief poll on conditions post-treatment
« Reply #41 on: April 20, 2009, 03:05:18 pm »
Hey Tam,

thanks for sharing this... I think, in my case, I have to respectfully disagree... as I know many that are posting sans post-treatment issues since they want to help out others that may be newbies. Tough call.

Phyl




What do you folks think...is a summary a good thing...worthwhile? If I do it I'll break it down by a range of tumor sizes, treatment type and approach and give averages for the responses. I think I'll want to wait for a little larger sample too.

My inclination is that you should do exactly what you stated.  Wait for a slightly larger sample size, break it down (tumor size/treatment type/averages) and make it abundantly clear that the summery is not scientific but simply an indicator based on AN post-operative results form a small sampling of our members.  That would be both factual and effective.  Well, it works for me.  :)

Jim

Also, keep in mind that we are likely a skewed group ( ;)) in that those who post are those more likely to have or have had difficulties.  There ARE multiple exceptions to this generality, our Jim included, but I would still postulate that most of the folks here are here because they've had issues.

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

NE Farmwife

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Re: Brief poll on conditions post-treatment
« Reply #42 on: April 20, 2009, 04:10:07 pm »
1. size of tumor pre-treatment     2.1 cm
2. treatment type (radio-surgery or surgery) - radio-surgery
3. delivery method or surgical approach taken - CK

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

7. hearing pre-treatment (1-10) 5
8. hearing post-treatment short term (3 months) (1-10) - 5
9. hearing post-treatment long term (1-10) 0, n/a

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)  n/a

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

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) n/a

19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful   10 - really is too early to tell
20. Comments - clarifications - Symptoms after CK is the same as before CK - have tinnitus, lower facial numbness, loss of hearing.  CK performed mid-January 2009.
21. where was your treatment performed? Stanford - Dr. Chang and Dr. Soltys
Diagnosed 11/11/2008   2.2 cm
CK at Stanford 01/12/2008
Facial numbness, hearing loss, lack of taste and tinnitis

sgerrard

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Re: Brief poll on conditions post-treatment
« Reply #43 on: April 20, 2009, 07:38:57 pm »
What do you folks think...is a summary a good thing...worthwhile? If I do it I'll break it down by a range of tumor sizes, treatment type and approach and give averages for the responses. I think I'll want to wait for a little larger sample too.

I would not summarize this along the lines of X percent retained hearing with translab, Y percent with retrosig, or other such technical measures. There is not enough data for that, and the 2008 ANA Survey is a better place to get those kind of numbers (Phyl posted the link).

I do think it is worth summarizing along the lines of "how good was your outcome." I notice that many rate it quite high, even when there is a significant negative symptom involved. Patient perception of quality of life, and satisfaction with results, seems to get overlooked, and would be useful information for new patients.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

kenneth_k

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Re: Brief poll on conditions post-treatment
« Reply #44 on: April 21, 2009, 06:54:33 am »
In my humble opinion, it should be summarized in order to call it a poll. At least that was what I expected when I answered. And now I'm darn curious.

Regards, Kenneth.