ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: stoneaxe on April 15, 2009, 10:24:43 pm
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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
2. treatment type (radio-surgery or surgery)
3. delivery method or surgical approach taken
4. balance pre-treatment (1-10)
5. balance post-treatment short term (3 months) (1-10)
6. balance post-treatment long term (1-10)
7. hearing pre-treatment (1-10)
8. hearing post-treatment short term (3 months) (1-10)
9. hearing post-treatment long term (1-10)
10. headache pre-treatment (1-10)
11. headache post-treatment short term (3 months) (1-10)
12. headache post-treatment long term (1-10)
13. Facial pre-treatment (1-10)
14. facial post-treatment short term (3 months) (1-10)
15. facial post-treatment long term (1-10)
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
20. Comments - clarifications -
21. where was your treatment performed, Drs?
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1. size of tumor pre-treatment - 6mm
2. treatment type (radio-surgery or surgery) - radio-surgery
3. delivery method or surgical approach taken - proton-beam
4. balance pre-treatment (1-10) - 9
5. balance post-treatment short term (3 months) (1-10) - 3
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) - 3
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) - 5
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) - 9
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) - 9
19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful - 3
20. Comments - clarifications - Bummed that its growing again obviously. If the radio surgery had actually killed it i'd have to rate my treatment success an 8 probably. Not as good as I would have hoped for but life is good. Cognitive issues mostly because i feel I'm slower at tasks that require a lot of concentration when I have a headache or my head is spinning or even just wonky.
21. where was your treatment performed, Drs? Mass General Drs Loeffler and Chapman
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1. size of tumor pre-treatment: 8 mm
2. treatment type (radio-surgery or surgery): radio-surgery
3. delivery method or surgical approach taken: Cyberknife
4. balance pre-treatment (1-10): 8
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): 5
8. hearing post-treatment short term (3 months) (1-10): 4
9. hearing post-treatment long term (1-10): 4
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): 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): 10
16. cognitive pre-treatment (1-10): 7
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 18 months ago. Fatigue was part of the cognitive issue.
21. where was your treatment performed, Drs? Drs. Chang and Gibbs, Stanford
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Thanks for that format change Steve...much easier to read...made the original look like yours.
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1. size of tumor pre-treatment: 11 mm CPA diameter, (17 X 13 X 11 mm)
2. treatment type (radio-surgery or surgery): surgery
3. delivery method or surgical approach taken: translab
4. balance pre-treatment (1-10): 6
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): 10
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): 7
11. headache post-treatment short term (3 months) (1-10): 7
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): 5
15. facial post-treatment long term (1-10): 9
16. cognitive pre-treatment (1-10): 4
17. cognitive post-treatment short term (3 months) (1-10): 10
18. cognitive post-treatment long term (1-10): 9
19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful: 9
20. Comments - clarifications : treatment was 7 months ago. SSD has decreased overall hearing. Cognitive, this thing was really getting on my nerves, couldn't sleep.
21. where was your treatment performed, Drs? Sven Eric Stangerup, Per Caye-Tomasen, Gentofte Hospital, Copenhagen Denmark.
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1. size of tumor pre-treatment 2.7cm
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): 3
6. balance post-treatment long term (1-10): I'll let you know when I get there
7. hearing pre-treatment (1-10): 5
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): 6 (Occaisional bad headaches, v. sharp lightning pains in head)
11. headache post-treatment short term (3 months) (1-10): 10 (none)
12. headache post-treatment long term (1-10): I'll let you know
13. Facial pre-treatment (1-10): 6 (complete numbness right side)
14. facial post-treatment short term (3 months) (1-10): 9 (eye stopped closing AN side day 12 post-op, following 6 day steroids all good and fixed)
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 (bit tired)
18. cognitive post-treatment long term (1-10): 10 I would imagine
19. would you deem your treatment a success (1-10) 10
20. Comments - clarifications - I'm extremely happy with my choice of treatment and Dr's. I wouldn't change things one bit.
21. where was your treatment performed, Drs? Royal Melbourne Hospital, Australia, Professor Andrew Kaye (Neurosurgeon), A/Prof Robert Briggs (ENT).
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1. size of tumor pre-treatment 1.8 cm
2. treatment type (radio-surgery or surgery): Surgery
3. delivery method or surgical approach taken: Translab
4. balance pre-treatment (1-10): 8
5. balance post-treatment short term (3 months) (1-10): 4
6. balance post-treatment long term (1-10): I'll let you know when I get there
7. hearing pre-treatment (1-10): 0
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): 10
12. headache post-treatment long term (1-10): I'll let you know.
13. Facial pre-treatment (1-10): 10
14. facial post-treatment short term (3 months) (1-10): 4 (fine immediately post op, next day HB scale III, can't wink AN eye, smile and forehead look funny)
15. facial post-treatment long term (1-10): I'll let you know.
16. cognitive pre-treatment (1-10): 10
17. cognitive post-treatment short term (3 months) (1-10): 10 if you don't count the bouncing off the walls for joy and steroids
18. cognitive post-treatment long term (1-10): 10 I hope
19. would you deem your treatment a success (1-10) 10
20. Comments - clarifications - These guys are ROCK STARS. Just watch out for Mili in Barker's office, pretend she doesn't exist and call Helen in McKenna's. Follow and advocate for your needs constantly before and during unless you don't mind making multiple trips and schedule changes.
21. where was your treatment performed, Drs? MGH Barker Tierney MEEI McKenna McCall
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1. size of tumor pre-treatment: 1.5 cm @ diagnosis - but 2.5+ @ surgery 6 weeks later (bad MRI measurements??)
2. treatment type (radio-surgery or surgery): surgery
3. delivery method or surgical approach taken: retrosigmoid
4. balance pre-treatment (1-10): 8
5. balance post-treatment short term (3 months) (1-10): 9
6. balance post-treatment long term (1-10): 9
7. hearing pre-treatment (1-10): 4
8. hearing post-treatment short term (3 months) (1-10): 0 (SSD)
9. hearing post-treatment long term (1-10): 0 (SSD - without my BAHA) about a 8 with my BAHA
10. headache pre-treatment (1-10): 10 (none)
11. headache post-treatment short term (3 months) (1-10): 10 (none)
12. headache post-treatment long term (1-10): 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): 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: ABSOLUTELY 10
20. Comments - clarifications : have a BAHA now - highly recommend
21. where was your treatment performed, Drs? Hinsdale Hospital, Hinsdale, IL Neurotologist - Robt. Battista (Ear Institute of Chicago), Neurosurgeon - Robt. Kazan
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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 2.5CM X 2.0CM X 1.6CM
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
7. hearing pre-treatment (1-10) 5
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 (none)
11. headache post-treatment short term (3 months) (1-10) 9 (dull mild headache)
12. headache post-treatment long term (1-10) 10 (none)
13. Facial pre-treatment (1-10) 6 (facial spasms)
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) 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 (lost hearing)
20. Comments - clarifications -
21. where was your treatment performed, Drs? see sig
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1. size of tumor pre-treatment: 17 mm
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): 9
7. hearing pre-treatment (1-10): 7
8. hearing post-treatment short term (3 months) (1-10): 5
9. hearing post-treatment long term (1-10): 5
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): 10
13. Facial pre-treatment (1-10): 10
14. facial post-treatment short term (3 months) (1-10): 2
15. facial post-treatment long term (1-10): 8
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) 9
20. Comments - clarifications : treatment was 18 months ago.
21. where was your treatment performed, Drs? University Klinik Mainz, Germany/Prof. Dr. Mann
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1. size of tumor pre-treatment: 3.5 cm(35 mm)
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): 6
6. balance post-treatment long term (1-10): 8
7. hearing pre-treatment (1-10): 2
8. hearing post-treatment short term (3 months) (1-10): 0(SSD)
9. hearing post-treatment long term (1-10): 0(almost put below 0 because of the tinnitus)
10. headache pre-treatment (1-10): 8
11. headache post-treatment short term (3 months) (1-10): 6
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): 6
15. facial post-treatment long term (1-10): 8
16. cognitive pre-treatment (1-10): 9
17. cognitive post-treatment short term (3 months) (1-10): 6
18. cognitive post-treatment long term (1-10): 9
19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful: 10
20. Comments - clarifications : surgery 08/2008; better outcome than I expected. Small sheath of tumor left on facial nerve. 1 yr followup MRI 08/2009
21. where was your treatment performed, Drs? Drs. Joseph Chang and Dennis Vollmer(Houston; Memorial Hermann-Texas Medical Center)
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1. size of tumor pre-treatment: 3+ CM
2. treatment type (radio-surgery or surgery): surgery
3. delivery method or surgical approach taken: retrosigmoid
4. balance pre-treatment (1-10): 5 (noticeable, not debilitating)
5. balance post-treatment short term (3 months) (1-10): 6 (a little worse than pre-surgery)
6. balance post-treatment long term (1-10): 6 (same after 3 months post-op)
7. hearing pre-treatment (1-10): 9 (minor loss)
8. hearing post-treatment short term (3 months) (1-10): 0 (SSD, left side)
9. hearing post-treatment long term (1-10): 0 (SSD, left side)
10. headache pre-treatment (1-10): 1 (virtually none)
11. headache post-treatment short term (3 months) (1-10): 5 (some)
12. headache post-treatment long term (1-10): 1 (virtually none)
13. Facial pre-treatment (1-10): 3 (minor tingling)
14. facial post-treatment short term (3 months) (1-10): n/a (no problems)
15. facial post-treatment long term (1-10): n/a (no problems)
16. cognitive pre-treatment (1-10): 3 (some)
17. cognitive post-treatment short term (3 months) (1-10): 3 (some)
18. cognitive post-treatment long term (1-10): 1 (very good)
19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful : 10
20. Comments - clarifications - You've covered the basics - I wasn't always sure whether a "1" meant few problems or a major issue so I've tried to note how I read the scale... Maybe I have more cognitive issues than I think!
21. where was your treatment performed, Drs? The University Hospital, Cincinnati, Ohio. Drs John Tew and Myles Pensak. EXCELLENT.
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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: 8
5. balance post-treatment short term (3 months): 7
6. balance post-treatment long term: N/A
7. hearing pre-treatment: 8
8. hearing post-treatment short term (3 months): 1
9. hearing post-treatment long term: I assume I will be SSD forever, so 1
10. headache pre-treatment: 9
11. headache post-treatment short term (3 months): 10
12. headache post-treatment long term: N/A
13. Facial pre-treatment: 10
14. facial post-treatment short term (3 months): 10 (issues after surgery resolved within 3 wks)
15. facial post-treatment long term: I assume I will continue to be fine, so 10
16. cognitive pre-treatment: 8
17. cognitive post-treatment short term (3 months): 8
18. cognitive post-treatment long term: N/A
19. would you deem your treatment a success: 9 so far
20. Comments - clarifications - I am 9 weeks post surgery, so I don't have a lot of long-term data yet, especially in terms of possible future regrowth. I haven't been able to remember things short-term very well for the past few years, but I'm not sure that it's AN related.
21. where was your treatment performed, Drs? Johns Hopkins in Baltimore, MD by Dr. Tamargo (neurosurgeon) and Dr. Carey (ENT). Very good team.
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1. size of tumor pre-treatment - 2.0 cm at diagnosis, 2.6 cm at time of surgery six weeks later
2. treatment type (radio-surgery or surgery) - surgery
3. delivery method or surgical approach taken - retrosigmoid
4. balance pre-treatment (1-10) - 8
5. balance post-treatment short term (3 months) (1-10) - 4
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) - 2
9. hearing post-treatment long term (1-10) - 2 (maybe a 4 with the hearing aid)
10. headache pre-treatment (1-10) - 9
11. headache post-treatment short term (3 months) (1-10) - 10 (no headaches .... yeah!)
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) - 10
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) - 10
18. cognitive post-treatment long term (1-10) - 9
19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful - 10
20. Comments - clarifications - my balance issues are more pronounced due to retrosigmoid surgery 15 years ago on the opposite side for MVD to relieve trigeminal neuralgia (with apparent vestibular nerve damage)
21. where was your treatment performed, Drs? Duke Raleigh Hospital, Dr. Fukushima (absolutely the best IMO)
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Well, I had brain surgery a year ago and can't figure out how to fill out this survey (obviously other brain surgery survivors have figured it out, so maybe it's just me). Should I select one of the responses, delete those numbers and fill in my own? Or is there another method?
Thanks!
Catherine (JerseyGirl 2)
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. size of tumor pre-treatment - see signature
2. treatment type (radio-surgery or surgery) GK
3. delivery method or surgical approach taken
4. balance pre-treatment (1-10) 9
5. balance post-treatment short term (3 months) (1-10) 9
6. balance post-treatment long term (1-10) 8
7. hearing pre-treatment (1-10) 6 - AN side
8. hearing post-treatment short term (3 months) (1-10) 5 - AN side
9. hearing post-treatment long term (1-10) 2 - AN side
10. headache pre-treatment (1-10) 7
11. headache post-treatment short term (3 months) (1-10) 7
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) 10
15. facial post-treatment long term (1-10) 10
16. cognitive pre-treatment (1-10) 9
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 is very successful 1 not successful 10!
20. Comments - clarifications -
21. where was your treatment performed, Drs? Wake Forest - Winston Salem NC; Drs McMullen & Tatter
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The ANA-sponsored 2008 survey has just been published on the ANA website:
http://www.anausa.org/patient_survey.html
Many of the questions noted in Bob's survey here are also answered in the ANA survey. Definately a good read.
Phyl
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ok, I'll play
1. size of tumor pre-treatment: 1cm
2. treatment type (radio-surgery or surgery): Radiosurgery
3. delivery method or surgical approach taken: Cyberknife Fractionated
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) 7
7. hearing pre-treatment (1-10) 9
8. hearing post-treatment short term (3 months) (1-10) 7
9. hearing post-treatment long term (1-10) 9
10. headache pre-treatment (1-10) 7
11. headache post-treatment short term (3 months) (1-10) 6
12. headache post-treatment long term (1-10) 7
13. Facial pre-treatment (1-10) 9
14. facial post-treatment short term (3 months) (1-10) 9
15. facial post-treatment long term (1-10) 9
16. cognitive pre-treatment (1-10) 7
17. cognitive post-treatment short term (3 months) (1-10) 7
18. cognitive post-treatment long term (1-10) 7
19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful 10
20. Comments - clarifications - None
21. where was your treatment performed, Drs? Beth Israel Boston, Drs Mahadaven, Wong
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Well, I had brain surgery a year ago and can't figure out how to fill out this survey (obviously other brain surgery survivors have figured it out, so maybe it's just me). Should I select one of the responses, delete those numbers and fill in my own? Or is there another method?
Thanks!
Catherine (JerseyGirl 2)
Catherine -
I don't know how everyone else did it, but I copied Steve's response. Then I basically responded to Bob's post and just pasted and edited.
There may be a more scientific way, but that worked for me.
Jan
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1. size of tumor pre-treatment: - 4.5 cm
2. treatment type (radio-surgery or surgery): - both
3. delivery method or surgical approach taken: - Retro/FSR
4. balance pre-treatment (1-10) - 4
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) - 1
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) 9
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) - 8
14. facial post-treatment short term (3 months) (1-10 ) - 9
15. facial post-treatment long term (1-10) - 9
16. cognitive pre-treatment (1-10) - 7
17. cognitive post-treatment short term (3 months) (1-10) - 8
18. cognitive post-treatment long term (1-10) - 9
19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful - 10
20. Comments - clarifications - The surgery/radiation procedure is advantageous for preserving the facial nerves.
21. where was your treatment performed, Drs? - Hospital of Saint Raphael, New Haven, CT Dr. Issac Goodrich, Dr. Judith Gorelick - neurosurgeons. Dr. Johnathan Haas - radiation oncologist.
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Jan,
Thanks for the instructions -- I'll give that a try!
Catherine
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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) -10
5. balance post-treatment short term (3 months) (1-10) -3
6. balance post-treatment long term (1-10) -7
7. hearing pre-treatment (1-10) -8
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) -1
11. headache post-treatment short term (3 months) (1-10) -8
12. headache post-treatment long term (1-10) -1
13. Facial pre-treatment (1-10) -10
14. facial post-treatment short term (3 months) (1-10) -3
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 - 8
20. Comments - clarifications - its been a long slow process returning to near normal from pre-surgery
21. where was your treatment performed, Drs? Presbyterian Hospital, Albuquerque, NM, Drs. Karl Horn & Andrew Mezger
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I may be wrong but it appears to me that some are answering the Headache section of this poll differently. Some appear to be rating 1 to 10 as 10 being normal (no headache) and 1 being bad. Others seem to be responding with 1 as no headache and 10 as bad head aches. Does anyone else see these as inconsistent?
Neil -
If you were referring to me, I did mistakenly post low numbers (for headache) when I meant to make them high. I corrected that. Thanks for noticing because, obviously, I didn't. :)
Jim
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1. size of tumor pre-treatment -2.8 cm (10 ccs)
2. treatment type (radio-surgery or surgery) - radiosurgery
3. delivery method or surgical approach taken - GK
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) -10
7. hearing pre-treatment (1-10) -9
8. hearing post-treatment short term (3 months) (1-10) - 9
9. hearing post-treatment long term (1-10) - 9
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) -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) -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: My presenting symptom, which was mild facial numbness (reduced sensation), still persists. No issues other than that.
21. where was your treatment performed, Drs? Toronto Western Hospital, Canada.
Marianna
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1. size of tumor pre-treatment: 9 mm x 3mm
2. treatment type (radio-surgery or surgery): surgery
3. delivery method or surgical approach taken: Mid-Fossa
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): 9
8. hearing post-treatment short term (3 months) (1-10): 6
9. hearing post-treatment long term (1-10): 7
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): 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 8 months ago. Fatigue and just taking a bit longer to think things out was the cognitive issue.
21. where was your treatment performed, Drs? Drs. Gantz and Woodson, University of IA Hospitals & Clinics
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1. size of tumor pre-treatment - 1.5cm
2. treatment type (radio-surgery or surgery) - surgery
3. delivery method or surgical approach taken - translab
4. balance pre-treatment (1-10) - 7
5. balance post-treatment short term (3 months) (1-10) - 4
6. balance post-treatment long term (1-10) - 8, but I'm only 5 mos post-op
7. hearing pre-treatment (1-10) - 9+
8. hearing post-treatment short term (3 months) (1-10) - 1 SSD
9. hearing post-treatment long term (1-10) SSD
10. headache pre-treatment (1-10) - 5
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) - 4
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) - 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 - For the balance question, I answered more as it related to dizziness/vertigo. My balance seemed pretty good pre-surgery - not wobbly, etc
21. where was your treatment performed, Drs? House Ear Clinic, Drs Friedman and Schwartz
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1. size of tumor pre-treatment: 3cm (3x4x?)
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): 5
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): 9
9. hearing post-treatment long term (1-10): 10
10. headache pre-treatment (1-10): 5
11. headache post-treatment short term (3 months) (1-10): 3
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): 7
18. cognitive post-treatment long term (1-10): 9
19. would you deem your treatment a success (1-10) 10 (very successful)
20. Comments - clarifications : treatment was 8+ months ago. Was a trigeminal tumor, not an AN, but involved the same cranial nerves. Was completely removed.
21. where was your treatment performed, Drs? University Hospitals Cleveland, Drs. Megerian and Bambikidis
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1. size of tumor pre-treatment: - 2.2 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) - 8
6. balance post-treatment long term (1-10) - TBD
7. hearing pre-treatment (1-10) - 1 (profound)
8. hearing post-treatment short term (3 months) (1-10) - 0 (SSD)
9. hearing post-treatment long term (1-10) - not there but 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) - not there but don't expect a change
13. Facial pre-treatment (1-10) - 10
14. facial post-treatment short term (3 months) (1-10 ) - 9 (10 with-in 2 weeks post)
15. facial post-treatment long term (1-10) - not there but don't expect a change
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) - not there but don't expect a change
19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful - 10
20. Comments - clarifications - My balance was extremely good, noticed slight change prior to surgery. Believe I started compensating before surgery. I did have facial twitching Oct/Nov 2008 then it stopped surgery was Feb 18th, 2009
21. where was your treatment performed, Drs? - St. Vincent Medical Ctr - Los Angeles, CA - Dr.s House, Schwartz and Stefan (my heros)
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Jan,
Thanks for the instructions -- I'll give that a try!
Catherine
Catherine...Jan has you on the right track, copy and paste from someone elses and then just write over their response.
Phyl...thanks for the survey link.
Thanks for the responses all.
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I changed my answer for the balance question, after thinking about it in the middle of the night...my first answer was based purely on "balance," which I think of as being able to stand up straight, no fear of falling, etc. However, I later thought you might have been asking the broader question of dizziness/vertigo, so I changed my answer. Perhaps I'm splitting hairs ::)
Cindy
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. 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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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/ (http://www.tampabayhearing.com/)
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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]
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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
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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
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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
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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]
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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
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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.
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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
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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
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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
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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
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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
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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.
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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
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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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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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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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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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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. 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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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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. 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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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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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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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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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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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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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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1. size of tumor pre-treatment - not known
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) 1
6. balance post-treatment long term (1-10) 8
7. hearing pre-treatment (1-10) 4
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) 1
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 6
20. Comments - clarifications - tumour was removed but the lasting side effects are bad
21. where was your treatment performed, Drs? United Kingdom in 1988
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Bob,
Don't worry about compiling all this now - just wait till after your surgery and you can add your answers to the poll!
Keri
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1. size of tumor pre-treatment...1.4cm
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)3
8. hearing post-treatment short term (3 months) (1-10)0SSD
9. hearing post-treatment long term (1-10)
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)
13. Facial pre-treatment (1-10)0
14. facial post-treatment short term (3 months) (1-10)1
15. facial post-treatment long term (1-10)
16. cognitive pre-treatment (1-10)2
17. cognitive post-treatment short term (3 months) (1-10)3
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 -
21. where was your treatment performed, Drs? Ottawa Civc Hospital, Ontario
Drs Schramm and Benoit
JO ;D
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1. size of tumor pre-treatment 1cm
2. treatment type (radio-surgery or surgery) SURGERY
3. delivery method or surgical approach taken RETRO
4. balance pre-treatment (1-10) 10
5. balance post-treatment short term (3 months) (1-10) 6.5
6. balance post-treatment long term (1-10) 8 (at seven months now)
7. hearing pre-treatment (1-10) 9.75
8. hearing post-treatment short term (3 months) (1-10) 6
9. hearing post-treatment long term (1-10) 8.75
10. headache pre-treatment (1-10) 10
11. headache post-treatment short term (3 months) (1-10) 8.5
12. headache post-treatment long term (1-10) 8.5
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) 8
18. cognitive post-treatment long term (1-10) 9
19. would you deem your treatment a success (1-10) 10 is very successful 1 not successful 8.5
20. Comments - clarifications - I get very mild headaches from time to time, but I am not really sure how much is related to surgery because I've also had some sinus issues that may be totally unrelated.
I see that many people rated their surgery a 10. Mine was clearly a 10 in terms of successfully removing the tumor without complications. But I'd like to rate myself now overall relative the guy before the surgey. I would rate my surgery higher than an 8.5 if I didn't still have dizziness/wonky headedness/waviness in my head when I walk or are more active than that. However, I am only 7 months post op. I am still improving. In another 4-5 months I may be able to rate the result higher if that waviness in my head subsides some more. Other than that, I would easily rate my result 10 because my hearing loss is barely noticeable, headaches are rare and very mild, I had no facial problems at all, my mental stamina is improving, and my tinnitus is basically the same as pre op (very mild) except on rare days etc... I guess I am one of the very lucky ones.
21. where was your treatment performed, Drs? Mt Sinai by Dr. Post and Dr Smouha (can't recommend enough)