Newly-diagnosed in IL

[Desilu]

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

[Musicman]

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.

[ppearl214]

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.

[Derek]

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

[Nick M]

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

[Derek]

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

 

[ppearl214]

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

[Nick M]

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

[ceeceek]

Good luck and let us know how it goes.
Ceeceek

[pearchica]

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

[Obita]

Good luck on the 12th Nick M and welcome!!

Kathy

[Nick M]

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