Author Topic: CK patient support group board  (Read 2891 times)

Mark

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CK patient support group board
« on: May 15, 2007, 08:54:43 pm »
Over the past few years the Cyberknife Patient support group message board has become a supplemental resource for many folks who frequent this forum.

The CK support group is in the process of disbanding and I felt compelled to advise those who utilize that message board of what the future status will probably look like.

First, the CK support group is ceasing official operations simply because there is not much ongoing need for the group to meet. The challenge for a support group of radiosurgery patients is that they generally do not have a lot of post treatment issues and do not stay involved , even though the CK and group address a wide range of patients beyond the AN community. Arguably, the greatest contribution the group has achieved is the establishment of the CPSG message board which was developed by one of our members, Valorie , in which numerous doctors have volunteered their time to answer questions from posters. Valorie was successfully treated for an AVM by CK, so while many of you would not know of her, I would encourage those of you who use the board to at some point thank her for her tireless efforts to set up and maintain it by leaving an e-mail at the admin address.

Second, at whatever point in the near future that CPSG dissolves, Accuray, the manufacturer of CK has indicated that it would be willing to pick up the cost to maintain the web site. So, at the end of the day, the resource should stay available to those who want to use it and I assume the dedication and generous time volunteered by drs Medbery, Spunberg, Chang, Fuller etc will continue as today.

The point of this post is to let everyone know that in the next 60-90  days the sponsorship of that web site will probably change but the value and free advice of the contributing doctors should continue.

FYI

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Derek

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Re: CK patient support group board
« Reply #1 on: May 16, 2007, 02:57:21 am »
Hi Mark...

Many thanks for updating us with that info. I too have found the CKPSG Message Board to be an invaluable additional resource albeit I am GK minded. Certainly hope that it continues in its present format.

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.

ppearl214

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Re: CK patient support group board
« Reply #2 on: May 16, 2007, 07:06:51 am »
Mark,

Thank you so much for letting us know.  The drs that have been there to support us, answer any and all questions on their own time (volunteer) and their wisdom, humor, etc. has been invaluable to me.. and to so many others. I'm sorry to hear that it's disbanding and do hope that Accuray helps to continue sponsoring the board.  I would have been lost during my decision making process... and post-treat.. if it wasn't for the dr's on the board (as well as many folks here).

Keeping fingers crossed that Accuray helps to carry on what so many patients need.

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

BevM

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Re: CK patient support group board
« Reply #3 on: May 16, 2007, 08:23:25 am »
Thank you for the information, Mark, it was new information for me.  I too have used the board for my decision making and continued support.

I hope it will continue. Is there anything we can do to make that happen?

Bev

marystro

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Re: CK patient support group board
« Reply #4 on: May 29, 2007, 07:20:40 pm »
Hi Mark,

* Hello to everyone...."

I certainly hope the board continues as before.  It has been a savior to me when I was going through my decision and post treatment process.  The doctors are awesome there!  Let us know what we can do to help...

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm