Author Topic: Newly-diagnosed in IL  (Read 11537 times)

Desilu

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Re: Newly-diagnosed in IL
« Reply #15 on: March 04, 2007, 11:39:51 am »
Hi Nick,

If you are still doing research, the ANA Chicago group is going to meet at the Downers Grove Library on Sunday, April 22, 2007 you are more than welcome to come. We usually have a guest speaker and we also have people that are pre and post op., watch and wait and CK and Gamma knife. If you would like more information, please give me a personal email.  Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

Musicman

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Re: Newly-diagnosed in IL
« Reply #16 on: March 04, 2007, 03:51:34 pm »
My comment was based on explanations by Dr. Chang about CyberKnife vs. Gamma Knife.  He mentioned that the radiation source was different and then he explained about European style of treatments which may be up to 30 sessions of very low dosage.  His comparison was to "success" rates.  The lower (European) dosages had about an 8% reoccurence rate but almost know "collateral" damage to nerves."  There slightly higher dosages of radiation over three days has only about a 2% recurrence rate, but there goal is 75% of their patients maintain the resources: hearing balance, etc.  A few lose a little hearing, even fewer regain some hearing.

To answer your question directly, the comments I made our my synopsis, summary of what Dr. Change told me while in my consultation.

17mm (still nice and small!!)
Received Diagnosis December 16, 2006
Currently scheduled for CyberKnife week of March 26, 2007

ppearl214

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Re: Newly-diagnosed in IL
« Reply #17 on: March 04, 2007, 04:08:24 pm »
thanks musicman.. now, to me, that makes more sense and I appreciate the elaboration...... Although I was not a fly on the wall during your discussions, would it be fair to say that he was referencing FSR/Novalis for the European style (Tony, Derek or any of the Europe gang, if you care to chime in, please do! :) Thanks!) or something else? As many know, the Novalis FSR doesn't bring as good an accuracy (as noted publically on the Novalis website) as the GK or CK treatments, so it is interesting in what Chang shared with you.

Thanks again for the elaboration... truly appreciated.
Phyl

My comment was based on explanations by Dr. Chang about CyberKnife vs. Gamma Knife.  He mentioned that the radiation source was different and then he explained about European style of treatments which may be up to 30 sessions of very low dosage.  His comparison was to "success" rates.  The lower (European) dosages had about an 8% reoccurence rate but almost know "collateral" damage to nerves."  There slightly higher dosages of radiation over three days has only about a 2% recurrence rate, but there goal is 75% of their patients maintain the resources: hearing balance, etc.  A few lose a little hearing, even fewer regain some hearing.

To answer your question directly, the comments I made our my synopsis, summary of what Dr. Change told me while in my consultation.


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

Derek

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Re: Newly-diagnosed in IL
« Reply #18 on: March 04, 2007, 06:05:20 pm »
thanks musicman.. now, to me, that makes more sense and I appreciate the elaboration...... Although I was not a fly on the wall during your discussions, would it be fair to say that he was referencing FSR/Novalis for the European style (Tony, Derek or any of the Europe gang, if you care to chime in, please do! :) Thanks!) or something else? As many know, the Novalis FSR doesn't bring as good an accuracy (as noted publically on the Novalis website) as the GK or CK treatments, so it is interesting in what Chang shared with you.

Thanks again for the elaboration... truly appreciated.
Phyl

My comment was based on explanations by Dr. Chang about CyberKnife vs. Gamma Knife.  He mentioned that the radiation source was different and then he explained about European style of treatments which may be up to 30 sessions of very low dosage.  His comparison was to "success" rates.  The lower (European) dosages had about an 8% reoccurence rate but almost know "collateral" damage to nerves."  There slightly higher dosages of radiation over three days has only about a 2% recurrence rate, but there goal is 75% of their patients maintain the resources: hearing balance, etc.  A few lose a little hearing, even fewer regain some hearing.

To answer your question directly, the comments I made our my synopsis, summary of what Dr. Change told me while in my consultation.




Hi Phyl...

My knowledge of FSR treatment within the UK is very limited other than I believe it usually involves the Linac method as the Novalis procedure (to my knowledge) is not available within the UK.  I am  therefore not aware of the Gy doseage rates and frequency rates of the fractionated sessions that are administered within UK treatment establishments.

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.

Nick M

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Re: Newly-diagnosed in IL
« Reply #19 on: March 06, 2007, 09:37:39 am »
Fellow AN'ers,
                 I've read so many great post, I'm getting confused about the difference in CK vs.GK. Should this be a question for my Doctor on appt. day Mar12, or can someone clear this up for me?
                                                                                          Nick
1.8 cm AN - right side
Gamma Knife scheduled for 4-26-07
with Dr. Getch, Northwestern Memorial Hospital, Chicago.

Derek

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Re: Newly-diagnosed in IL
« Reply #20 on: March 06, 2007, 02:14:26 pm »
Hi again Nick...

You are absolutely right in your analogy...the avalanche of data, stats, opinions etc can be very confusing.

On the understanding that you are eligible for stereotactic radiosurgery and that either CK or GK will be your chosen option then the next thing to consider is whether CK and GK are both available in your area re on a personal stance, CK is not available anywhere within the UK and therefore my ultimate stereotactic radiosurgery treatment option will be limited to GK.

If CK and GK are both available to you then there is very little to chose between either option relevant to accuracy of the delivered treatment. GK has been tried and tested worldwide for over 35 years and has data and stats to indicate a success rate of around 98%. CK has been available for a much lesser period in consequence of which the long term available data is not as substantive. The other main factor for consideration is that GK requires the fitting of a head frame, which most folks have no real bother with, whilst with CK a moulded plastic mesh type mask is used over the facial area to facilitate the treatment which may have greater appeal to some.

I hope that this brief synopsis is of some assistance to you. Best wishes for a successful outcome with whatever treatment choice you ultimately decide upon.

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: Newly-diagnosed in IL
« Reply #21 on: March 06, 2007, 02:50:56 pm »
Nick,

Derek is on the money and Derek... thank you :)  I think I owe you Cadbury or Jaffa Cakes on my next trip over! :)

I can share 1 tidbit more on it.... since GK is a single dose treatment and CK is mostly fractionated (yes, 1 dose is sometimes recommended, but for the most part, it's usually done in 3-5 dose), fractionating the treatments thought process is... by fractionating, there is potentially lower risk of the surrounding, normal structures from being affected by the radiation....

(I think I need more coffee, that didn't sound right..., but I think you all know what I meant).

Nick, many of us here that have had FSR/CK/GK are more than happy to loan our good ears (and shoulders) if need be.... you can send any of us a PM here.

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

Nick M

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Re: Newly-diagnosed in IL
« Reply #22 on: March 07, 2007, 03:15:44 pm »
Derek and Phil,
                Thanks for the info. We did our best through research and info on this site to schedule an appt. with a doc. that is  experienced in neurological surgery and sterotactic radiosurgery. Reading your posts answered a lot of my questions before they had become an issue. I'll let you know how my Mar.12 appt. goes. Thank You everyone for your insight and support and all of you sure have mine!
                                                                   Nick
1.8 cm AN - right side
Gamma Knife scheduled for 4-26-07
with Dr. Getch, Northwestern Memorial Hospital, Chicago.

ceeceek

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Re: Newly-diagnosed in IL
« Reply #23 on: March 07, 2007, 05:47:21 pm »
Good luck and let us know how it goes.
Ceeceek
Such is life...Finally identified...vidian nerve schwanomma, 2.8x2.8x3cm.....in the middle but under my brain.....post transphenoidal endoscopic surgery April 19th, 2007 Pre CK treatment in Sept 07.....re-arranged cavity in hopes of reducing side effects and now officially diagnosed as hard headed.

pearchica

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Re: Newly-diagnosed in IL
« Reply #24 on: March 12, 2007, 11:18:44 am »
Derek, Phyl and gang: you continue to amaze me with your knowledge! Farm girl here just went for the zap! Nick, I was really pleased with my treatment at Stanford and while I'm not out of the wood, I do have full faith that the zapping will work. Keep us updated on your progress.   Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

Obita

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Re: Newly-diagnosed in IL
« Reply #25 on: March 12, 2007, 07:13:30 pm »
Good luck on the 12th Nick M and welcome!!

Kathy

Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Nick M

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Re: Newly-diagnosed in IL
« Reply #26 on: March 13, 2007, 07:46:19 pm »
Fellow AN"ers
  I'm scheduled to have GK surgery on Apr.26. I was very impressed both with Dr. Getch and the Northwestern facility.  Dr. Getch is also a co- director of the Gamma Knife facility there. He spent a lot of time with me and answered my questions.  We actually had an enjoyable appointment and Dr. Getch and I ended up talking about hunting and the outdoors. 

Dr. Getch spent time drawing diagrams, talking about the MRI, etc. with my wife, our daughter (a medical student), and myself.  He was interested in the fact that I had an aneurysm/stroke on the same side in 1991.  He thinks it is probably a coincidence.

So far so good.  Personally, I decided I wanted to avoid surgery if possible, so I was glad that he was in favor of Gamma.  In fact, he opened our conversation by saying that 70% of acoustic neuromas treated in 2007 would be treated by gamma knife.  Will keep you posted on my experience with the surgery and the after-effects.  I have to report one day early for a CTA - some type of CT scan with dye to look at my blood vessels.

I can't tell you how much I value this site and all that I have learned from all of you.  Thanks for your support.

Nick
1.8 cm AN - right side
Gamma Knife scheduled for 4-26-07
with Dr. Getch, Northwestern Memorial Hospital, Chicago.