Author Topic: Does anyone have a positive experience with "watch & wait"?  (Read 25720 times)

leapyrtwins

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Re: Does anyone have a positive experience with "watch & wait"?
« Reply #30 on: March 29, 2013, 08:29:25 am »
Annamaria -

I lost track.  Are you still watch & wait?

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

arizonajack

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Re: Does anyone have a positive experience with "watch & wait"?
« Reply #31 on: March 29, 2013, 09:25:09 am »
Here's a link to the full article that Annamarie posted:

http://thejns.org/doi/pdf/10.3171/2012.6.FOCUS12192

Very detailed.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

skipg

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Re: Does anyone have a positive experience with "watch & wait"?
« Reply #32 on: March 29, 2013, 06:58:06 pm »
That is a great reference to help in our understanding and treatment choices. I wonder if they will bring this up at the next symposium. The last one in Cincy is where I gleaned a lot of info towards my eventual WW, but this study was not up yet.
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

mesafinn

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Re: Does anyone have a positive experience with "watch & wait"?
« Reply #33 on: April 03, 2013, 10:04:45 am »
My ENT gave me this research yesterday.  He also indicated that when surgeons were asked which approach they would make, the majority said "Watch and Scan" (source:  Clinical Otolarngology, 33, pp. 236-238. 

Clin Otolaryngol. 2008 Jun;33(3):255-9. doi: 10.1111/j.1749-4486.2008.01705.x.
Conservative management of vestibular schwannomas: third review of a 10-year prospective study.
Hajioff D, Raut VV, Walsh RM, Bath AP, Bance ML, Guha A, Tator CH, Rutka JA.
Abstract

Seventy-two patients with a unilateral vestibular schwannoma have been treated conservatively for a median of 121 months. They have been followed prospectively by serial clinical examination, MRI scans and audiometry. Twenty-five patients (35%, 95% CI: 24-47) failed conservative management and required active intervention during the study. No factors predictive of tumour growth or failure of conservative management could be identified. Seventy-five per cent of failures occurred in the first half of the 10-year study. The median growth rate for all tumours at 10 years was 1 mm/year (range -0.53-7.84). Cerebellopontine angle tumours grew faster (1.4 mm/year) than intracanalicular tumours (0 mm/year, P < 0.01); 92% had growth rates under 2 mm/year. Hearing deteriorated substantially even in tumours that did not grow, but did so faster in tumours that grew significantly (mean deterioration in pure tone average at 0.5, 1, 2 and 3 kHz was 36 dB; speech discrimination scores deteriorated by 40%). Patients who failed conservative management had clinical outcomes that were not different from those who underwent primary treatment without a period of conservative management.
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

Derek

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Re: Does anyone have a positive experience with "watch & wait"?
« Reply #34 on: April 03, 2013, 11:54:26 am »
Many thanks Patrick for the synopsis to that very interesting research which every W & W stalwart will greatly appreciate, particularly the opening reference that the majority of surgeons would choose W & W as their treatment option and the ultimate paragraph indicating that if W & W (conservative management) was not ultimately successful then the clinical outcomes were no different to those who had opted for intervention without first having embarked upon W & W following initial diagnosis. Very informative and encouraging for those who are in a dilema regarding W & W.

Regards

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

arizonajack

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Re: Does anyone have a positive experience with "watch & wait"?
« Reply #35 on: April 03, 2013, 12:50:58 pm »
particularly the opening reference that the majority of surgeons would choose W & W as their treatment option

Well, not exactly.

What it said was:

"when surgeons were asked which approach they would make, the majority said "Watch and Scan"

That implies that SOME surgeons were asked and the majority of those surgeons said "Watch and Scan."

That doesn't mean that the majority of ALL surgeons said "Watch and Scan."

Besides, the article on conservative management is from 2008 and reports of one study with 72 patients.

The article from UPMS is from 2012 and compiles the results from about 80 studies of about 6000 patients patients.

Food for thought.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

robinb

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Re: Does anyone have a positive experience with "watch & wait"?
« Reply #36 on: April 03, 2013, 01:35:09 pm »
Actually, theres a survey out there somewhere that was sent to Congress of Neurological Surgeons that had over 600 responses asking two questions about what they would do if they had AN. I believe the result of the scenarios presented indicated most of them would choose radiosurgery over surgical resection or fractionated. Second most response was watch and wait. I have the article somewhere or can find it on the web, but thouhgt id mention it. Dr. Kondziolka and/or Dr. Lunsford quote this in one of their presentation papers.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

Derek

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Re: Does anyone have a positive experience with "watch & wait"?
« Reply #37 on: April 03, 2013, 02:45:27 pm »
particularly the opening reference that the majority of surgeons would choose W & W as their treatment option

Well, not exactly.

What it said was:

"when surgeons were asked which approach they would make, the majority said "Watch and Scan"

That implies that SOME surgeons were asked and the majority of those surgeons said "Watch and Scan."

That doesn't mean that the majority of ALL surgeons said "Watch and Scan."

Besides, the article on conservative management is from 2008 and reports of one study with 72 patients.

The article from UPMS is from 2012 and compiles the results from about 80 studies of about 6000 patients patients.

Food for thought.

I think it is fairly obvious that I was specifically referring to the surgeons who were involved in the particular survey as outlined by Patrick and not to ALL surgeons in general. The fact that the article was published in 2008 is irrelevant unless there was subsequent data available discrediting the findings.

Interesting that some who have opted for microsurgery or radiosurgery tend to have rather negative views relevant to the many positive aspects of conservative management.

More food for thought...perhaps!
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

jsanders1379

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Re: Does anyone have a positive experience with "watch & wait"?
« Reply #38 on: April 03, 2013, 03:44:19 pm »
Although the study cited here is older (2002), it is interesting in that it takes into account the surveyed surgeons' ages, and the particular details of different case studies and how they might have impacted their decisions
http://www.acousticneuroma.neurosurgery.pitt.edu/docsurvey.html
Jeanne
Dx 10-25-2012
5x6x4 mm
3-27-2013 MRI 9x6x6 mm
GK  5-7-13 Swedish Hospital, Denver

skipg

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Re: Does anyone have a positive experience with "watch & wait"?
« Reply #39 on: April 03, 2013, 03:48:24 pm »
Very interesting reading, these studies. As you know I chose WW. This was after much reading and consulting. I was one on the lucky few whose tumor decide to have a growth spurt. It is wort noting that after the diagnosis I continued on a healthy lifestyle. I do not smoke or drink. My diet consist of very little red meat, pork on the holidays for, Christmas, Easter, New years. Barley greens, and fruit daily, along with assorted vegetables. And dont forget the fish oil, D3, and B12. At least I felt better but it did not stop the little bugger from growing. Just goes to show you everyone is different and these AN,s act differently for different people.
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

robinb

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Re: Does anyone have a positive experience with "watch & wait"?
« Reply #40 on: April 03, 2013, 04:33:31 pm »
Hi Jeanne-

Thanks for posting that link, exaclty was I was referring to!!
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

Jackie

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Re: Does anyone have a positive experience with "watch & wait"?
« Reply #41 on: April 03, 2013, 06:02:53 pm »
MRI results are in and EVERYTHING REMAINS STABLE, NO CHANGE IN SIZE!! I have been Watch and Wait now since Jan. 2007

I am so happy, doing that famous dance!
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

Derek

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Re: Does anyone have a positive experience with "watch & wait"?
« Reply #42 on: April 04, 2013, 02:13:30 am »
Many congrats on your good news Jackie...good to know that W & W is working well for you and long may that comtinue  :)

Regards

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Jim Scott

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Re: Does anyone have a positive experience with "watch & wait"?
« Reply #43 on: April 04, 2013, 01:57:07 pm »
Congratulations on the fabulous news, Jackie!  Six years as a Watch & Wait AN patient is extraordinary!  I very much hope your AN is permanently dormant.

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

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

jsanders1379

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Re: Does anyone have a positive experience with "watch & wait"?
« Reply #44 on: April 04, 2013, 04:05:32 pm »
 Congratulations!!! :) :) :) :)
Jeanne
Dx 10-25-2012
5x6x4 mm
3-27-2013 MRI 9x6x6 mm
GK  5-7-13 Swedish Hospital, Denver