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Author Topic: FSR or GK for 2.5-3 cm AN  (Read 5293 times)

bob_michigan

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FSR or GK for 2.5-3 cm AN
« on: March 27, 2006, 10:07:19 pm »
As indicated in my signature block below, I was recently diagnosed with a medium-large AN.

I feel negatively about traditional surgery, so that's not for me.  My objective is to focus on the tumor, so I am not worrying about preserving my left ear hearing.  So perhaps either Gamma Knife or FSR are options for me.

Status on GK --- I have studied GK.  I live very close to a Gamma Knife center, where the neurosurgeon has done over 400 radiosurgeries including about 50 AN's.  My research included a few hours of consultation with the GK staff.

Status on FSR --- This week I am going to be focusing on completing my study of FSR, including a special focus on Johns Hopkins 5-session FSR ......including consultation appointments there on Friday.

If any inputs, please send them, because this week is getting very close to a final decision for me.

Thanks,  Bob H
2.3 cm diam 2.6 cm long AN
   neurosurgeon reports longest dimension ("tail") is 3 cm
Diagnosed (Feb 06)
« Last Edit: March 27, 2006, 10:12:11 pm by bob_michigan »
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2.3 cm diam 2.6 cm long AN
   neurosurgeon reports longest dimension ("tail") is 3 cm
Diagnosed in Feb 06

Mark

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Re: FSR or GK for 2.5-3 cm AN
« Reply #1 on: March 28, 2006, 12:08:55 am »
Bob,

This link might be helpful in comparing radiosurgery options

http://www.cksociety.org/PatientInfo/radiosurgery_stereotactic_technology_comparisons.asp

Good Luck

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

Larry

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Re: FSR or GK for 2.5-3 cm AN
« Reply #2 on: March 28, 2006, 05:38:32 am »
Bob,

Welcome to our exclusive club. Looks like you are following the golden rule and that is to research and get different opinions.

There are many experiences by people on this site re CK and GK. Do various searches on the topic. Jamie (user) has also supplied some terrific references as to mark so you could search there. You may also want to get peoples experience with the hospital / surgeon. There are a wide variety of vies here.

From my understanding, you have a better chance of retaining your hearing by having radiation treatment versus surgery.

Take care, keep posting, use and enjoy this site as there are terrific facts available and also some good humour which we have found to be very theraputic.

Laz
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2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

ppearl214

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Re: FSR or GK for 2.5-3 cm AN
« Reply #3 on: March 28, 2006, 10:28:45 am »
Hi Bob,

Welcoming you to the gang as well.  I commend you as you are sounding rather "together" and really doing some terrific homework. 

The link Mark shared is a terrific one... hope you find it as helpful as I did in making my decision. Made my decision in the past month and like you, weighed out anything and everything with all the info I found on this site, as well as talking to patients that have experienced many of the treatments available to us.  Sounds like you are doing the right thing in your research and hoping your decision will be as easy as possible (and stress-free) as possible.  Your "gut" should be able to guide you as to which treatment will be best for you and your situation.

Always an ear if you need one... or as Laz noted, always here for a giggle as well... a great stress-reliever if need be.

Best wishes,
Phyllis

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shoegirl

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Re: FSR or GK for 2.5-3 cm AN
« Reply #4 on: March 28, 2006, 11:24:50 am »
Hi! Bob,

Welcome, I am not sure if you are considering Cyberknife or not, but you may want to check out the cyberknife support group.  www.cyberknifesupport.org  One of the things I like about the site is that their are drs. who will respond to your posts.  They may be able to give you some insite as well as compare FSR, GK, and CK for the size and location of your AN.

Jamie and Mark are the "resident experts". 

Glad to hear you are doing your homework!

Best Wishes, Suzanne
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left side 2.0cm x 1.3cm  
Cyberknife - 12/2005
The Barrow Institute, Phoenix, AZ

ppearl214

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Re: FSR or GK for 2.5-3 cm AN
« Reply #5 on: March 28, 2006, 12:52:38 pm »
Suzanne,

Thanks for posting the link to the CK support board...I have to admit... I have worn out poor Drs Medbury and Spunberg but they are always so cordial and happy to answer the questions.... I owe them more drinks than they can handle for all the support and insight they have shared with me.

Phyl
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Larry

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Re: FSR or GK for 2.5-3 cm AN
« Reply #6 on: March 28, 2006, 07:56:09 pm »
Phyl,

Its great that you have a couple of doctors that you are comfy with. That is one of the really good things about this site - the info sharing. as I have said before, I wish I knew of this site pre my op but, s... happens as they say. Anyway, the more we can spread the appropriate links and stuff, the better new members will be.
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2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

ppearl214

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Re: FSR or GK for 2.5-3 cm AN
« Reply #7 on: March 28, 2006, 09:34:07 pm »
I'm giving you a hearty AYE-MEN to that one Laz!  This site, all of you and yes, even the fun we have around here, has certainly made this journey of mine/ours MUCH more tolerable. Thank you! :)

Quote from: Larry on March 28, 2006, 07:56:09 pm
Phyl,

Its great that you have a couple of doctors that you are comfy with. That is one of the really good things about this site - the info sharing. as I have said before, I wish I knew of this site pre my op but, s... happens as they say. Anyway, the more we can spread the appropriate links and stuff, the better new members will be.
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BP Wench

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Re: FSR or GK for 2.5-3 cm AN
« Reply #8 on: March 28, 2006, 10:43:36 pm »
what are the guidelines for gk and size?  I know I was told no by two specialist but...I also had brain stem involvement which I'm sure changes the game a bit.  Mine was 2.8 CM. 
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Mark

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Re: FSR or GK for 2.5-3 cm AN
« Reply #9 on: March 28, 2006, 10:54:33 pm »
BP,

It is always imperative to show the scans to radiosurgeons that you are interested in working with, but the rule of thumb is that radiosurgery can be very effective up to 3 cm. From conversations I've had in the last year with Docs that work with the Cyberknife that limit might be into the low 3 range as a result of the improved accuracy of CK. Radiosurgery probably gives better facial nerve and hearing preservation odds for folks with medium to large AN's than surgery where results tend to decline with size. On the other hand, if there is significant enough displacement caused by the AN or symptoms specifically related to it's presence, then surgery to physcially remove will usually be the better option. All those aspects need to be evaluated by an experienced AN neurosurgeon, preferably one that does both treatment options in my opinion

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

okiesandy

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Re: FSR or GK for 2.5-3 cm AN
« Reply #10 on: March 28, 2006, 11:06:15 pm »
Geez Phyl,

I am  glad you waited to owe my doctor all of those drinks until after I had my CK. Could you hold off until after next week when I have my 3 month MRI and consult with Dr. M?  When he wants me to try and walk in a straight line should I ask him to do the same? ;)

Sandy
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Cyberknife 1/2006
Clinton Medbery III & Mary K. Gumerlock
St Anthony's Hospital
Oklahoma City, OK
Name of Tumor: Ivan (may he rest in peace)

BP Wench

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Re: FSR or GK for 2.5-3 cm AN
« Reply #11 on: March 28, 2006, 11:08:17 pm »
Thanks Mark.  Due to time constraints and brain stem involvment I didn't have a whole lot of time to research but everything I found and was told 2.3CM was the cut off for CK or GK.  I just went with it as I didn't feel very good and just wanted everything overwith.  Of course at this stage I'm second guessing but really feel I had no other options but what I did chose.  If I had to do it all over again I'd have gone GK which might have been possible if the first doc didn't misdiagnosis me for almost a year. 

thanks for the clarification!
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ppearl214

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Re: FSR or GK for 2.5-3 cm AN
« Reply #12 on: March 29, 2006, 06:31:26 am »
Sandy,

Glad to help!  Figured that you had your MRI and consult upcoming, so figured I'd get him "loopy" post-consult appt! :D

Can you please thank him for me for ALL of his help, private emails, consults, etc?  He is truly amazing and you are so so so so so lucky to be in his care.  Dr Medbury, amongst others, are the reason I choose CK and had my "gut" feeling about CK from the onset of my research for my decision.

Good luck at your appt!  Will look for the updates to you appt! :)

Phyl

Quote from: okiesandy on March 28, 2006, 11:06:15 pm
Geez Phyl,

I am  glad you waited to owe my doctor all of those drinks until after I had my CK. Could you hold off until after next week when I have my 3 month MRI and consult with Dr. M?  When he wants me to try and walk in a straight line should I ask him to do the same? ;)

Sandy
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