ANA Discussion Forum
AN Community => AN Community => Topic started by: Sam Rush on May 29, 2007, 09:36:56 pm
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We will be having our meeting Wed June 6 7:00 pm at Clovis Hosp. Classroom, Guest speaker will be neurosurgeon Dr. Brian Clague, who will speak on the cyberknife in general, and how it applies to AN pts. For more info, call me at 559 287 8266
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Sam, thanks for the heads up on this for everyone. I'd love to hear about the talk that Dr. Clague will give about CK... will you share with us what he has to say after the meeting? Would love to know.......
Phyl
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OK. Dr Clague is an experienced neurosurgeon, who has only done a few AN surgeries, especially after the modern surgical tecqniques were developed. He is now retired from practice, and is CEO of a group of Doctors, in partjnership with Fresno Comm Medical Center who have brought a cyberknife to Fresno. I told him in no uncertain terms, that I want his talk to be academically orientated, and not a marketing speech,. I will play the devil's advocate and contrast his results with microsurgery in experienced hands. We have several AN pre-treatment members who are very interested. I usually encourage microsurgery for those in otherwise good health, citing the House Clinic statistics.. Anyone who can come, call me for directions 559-287-8266 Family and friends welcome.
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Sam, what is Dr. Clague's experience in CK? How long has he performed it and where?
Phyl
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He is new at it, and mainly serves as a marketer for the other physician partners, which include oncologists and ent Drs. I get the feeling that he is just a token neurosurgeon to have on their board. The unit here is new, and they have only done a few AN pts with it. They approached me knowing I was an AN pt. and worked w/ the local support group. I agreed to let them give a presentation, as long as it was more academic than marketing. Also, they are providing refreshments and helping me organize the meeting. I still favor surgery in healthy people and have the statistics to back it up.
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Hi Sam and thanks..... well, it should be interesting and I pray that they give an "unbiased" opinion on it... it's a shame no dr that has experience in using CK (ie: Chang, etc) can attend as I think it would make it more "educational from experience". It's great they are willing to help with refreshments and all..... so, will be real interested to see how they share the info and just how much will be marketing.
As for your comment re: surgery over radio-surgery, I respect your thoughts and beliefs on it..... but know that it is not the only viable source of AN treatments... please try to remain considerate as there is stats to back up radio treatments as extremely viable treatment options for AN's as well. Please note that radiosurgery is also now prevelent as a choice on smaller AN's with terrific outcomes... please keep this all in mind....
thanks again,
Phyl
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Sam,
I would echo Phyl's comments in that I respect your personal preference for surgery over radiosurgery. However, based on your earlier post you seem to put a lot of weight on studies specifically from HEI in forming that opinion, which I would challenge as to how many of those are "peer reviewed". I have researched a large number of national studies on both treatment options from a variety of teaching medical centers and I'm pretty sure I don't see a compelling case that the hearing and facial nerve preservation results for surgery are better than radiosurgery. That is above and beyond the possible complications of the surgery itself. I know from your previous posts that you are a big fan of HEI , and I would agree they are among the best at surgical ressection of AN's, however, having read posts in this forum over the years, while it is clearly their focus, I don't think their results are infallible either. As a presenter to a support group, I would agree with you that I would dissuade anyone from a marketing piece , which would include HEI if you brought them in. On the other hand, I would also hope you would keep your personal bias in check for the benefit of others in attendance and still considering both options.
Just my 2 cents
Mark
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I think it's great that you are involved in the talk coming up for CK and that you are speaking also about surgery. I myself had fsr linac. (25 days)....
It is always good that info is given about the options one might have.
Bottom line is what stops the An and leaves us with the best after effects?
W.
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Sam,
To bad I don't live in CA, I'd like to attend your program on CK. Well done on putting that together. Don't worry about some of the comments about bias. Looking at some of the comments above, it seems that some who ask for non-bias have a clear bias themselves.
Regards,
Rob
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This is supposed to be a support/educational forum. The educational part is where are the best outcomes and by who. Sure CK and other radiation is more convenient and less frightening , but some experienced groups (eg HEI) have such outstanding results from surgery, that the tumor is GONE!!! with extrememly rare recurrance. Don't have to worry about is it necrosing or not.
Do we want to educate people where to go for the least chance of facial paralysis, or not??
Do we want to educate people that HEI has the only internist in the WORLD, whose full time job is pre and post-op care of AN pts!!
I'm not biased, I'm a doctor, which is Greek for teacher. I don't get paid by HEI.
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Sam,
I respect the fact that you are a doctor, but you most clearly have a bias in your perspective based on your comments. In the case of AN's I learned a long time ago that just being a doctor doesn't make one an expert in that specific area.
Do we want to educate people where to go for the least chance of facial paralysis, or not?? Sure, let's put all the clinical studies on the table. I've yet to see a study on radiosurgery that had a paralysis risk of greater than 1%, regardless of size. Surgery, in small AN's is probably as high as 95% , even at HEI and drops in percentage as the size of the AN increases.
Do we want to educate people that HEI has the only internist in the WORLD, whose full time job is pre and post-op care of AN pts!! Sure, we can tell people that although I'm not clear what an internist "dedicated to pre / post op AN pts" does to have any impact on facial / hearing nerve preservation or anything else related to the surgical outcome. I guess I need some help understanding the benefit of this beyond a marketing aspect.
but some experienced groups (eg HEI) have such outstanding results from surgery, that the tumor is GONE!!! with extrememly rare recurrance. Don't have to worry about is it necrosing or not. I'm sure you have some studies from HEI that support your position, but the best surgical outcome studies I've seen are around 95% while radisourgery typically comes in at 98%. Even if you want to say radiosurgery is something less, it is still equal or better than surgery. One can argue against having it dead and doing no further harm vs. having it physically removed at the expense of the trauma to tissue it causes. As a doctor, I'm sure you would also agree with the risk of post surgical complications or noscomial infection associated with a hospital stay. While I'm not a clinician, I have been involved with medical supplies and the clinicians who use them for 25 plus years and have a pretty good understanding of how many people have prolonged hospital stays or don't check out at all because of those risks and HEI is not immune to that either.
I'm not biased, I'm a doctor, which is Greek for teacher. I don't get paid by HEI. I don't know Greek, but I do know a good teacher creates an environment where the students are provided information in an open environment from which they can challenge and draw their own conclusions. I have responsibility for 10 business units doing over a Billion dollars in revenue and involving a thousand employees, so my role involves teaching every day. There is a fine line between moderating a meeting with competing points of view for an educational purpose and being adversarial and trying to influence the audience. As Phyl said in her initial post in this thread, I think the evidence is pretty compelling that both treatment options can be viable and effective. If you're positioning the discussion along those lines from the start then that's very fair, and I sincerely hope that is your intent.
Mark
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Mark,
I'm becoming uncomfortable with your attacks on people who may not share your views. The quotes from Sam's that you then try to take apart tooth and nail are petty. As far as bias, from your post in this forum, you clearly have a bias toward radiosurgery. If you feel that radiosurgery is the better treatment, fine. Statistics don't always tell the whole story. A personal decision for treatment type can be based on many factors including outcome statistics.
Sam is involved in his local support group by engaging professionals to present their technology. I fully support, and applaud, his doing so for the educational benefit of AN patients. You should too.
Regards,
Rob
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I'm sorry I started this thread. I'm not here as a Doctor, but as an AN patient, who had never seen a case of AN until my own. I have researched it for my own benefit and then got the best treatment in the world. I will no longer recc. anything to anybody in this subject, except to do your own research. However, if I find a case of AN in one of my patients, they are going to consult with House clinic.
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Keep posting Sam. We need all sides here. And we need to be reminded of them.
For the rest of you, I'd like to add that as far as radiation treatment goes, not everyone has ck in their backyard and thus the magic 98% that Mark mentioned plus it may not be available, plus plenty of places give a smaller % even 95% and 90-95% in person even when their stats are higher.... The thing is many variables come into the picture: size, location location location (it's like real estate), and so on. I was fortunate to discuss surgery, GK, and linac fsr and i spoke in person with Aners from each treatment modality and there were those in each who had very successful outcomes and gave me detailed stories. My particular circumstances meant fsr was the way to go for me...
Sam's workshop/conference hasn't even happened yet so it blows me away to see comments about bias like this.
And, heck, I'd be tooting my horn regardless of which treatment i'd had if it was succcessful so right now i will toot it for 25 fsr days... ;D
So here's a thumbs up for a conference that Sam as an Aner is putting together that will offer info on surgery at house and radiation with ck. :D "Good to go!"
W.
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Sam, your ultimate goal of organizing this event and informing all of it if they would like to attend has been achieved. I hope you have a terrific turnout and again, please keep us updated as to how it goes and what the dr has to say.
I hope it is a successful day for you.
Phyl
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sam it looks like you're getting into a police car?
I think you're involvement is great!
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I've been on this forum for many years and have never seen Mark attack anyone, he has been a wealth of information, support and help, not only on the forum, but through private e-mails and phone calls.
Sam - good luck on the meeting tonight, please check in and let us know how it went.
Cheryl
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Rob,
It was not my intent to "attack" Sam, and yes, I do applaud his openness to expose his support group to any and hopefully all treatment options whether it be CK, GK, trilogy or rubbing one's head with herbs, chewing gum and walking backwards. All options should be considered viable and let folks make a decision based on that. I think my record of posting would support that I don't attack people but I will challenge, hopefully always with respect, any information that I don't feel is accurate. Sam has a preference for surgery based on his individual experience and I understand that. I have many times posted that I think HEI is a great option for surgery, but I also don't think their results are flawless either. I also tend to lean toward radiosurgery becuase of a) my personal experience b) feelings about invasive surgery and c) studies of the literature. However, those that have talked or corresponded with me individually who were undecided I think would affirm that I'm pretty balanced in my portryal of both options and I've probably had all of those split down the middle as to their final decision. I tend to post more on radiosurgery because there are more inaccurate posts about it than surgery, but you have no basis to evaluate what my bias is and how I portray options to people I talk to. I make great efforts to "walk the talk" as I put in my post on Sam"s Thread
Mark
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To Mark..to Sam....to Bruce... to cheryl, Rob, Michelle et al.... I thank you for sharing as you do... for reaching out to others as you do... for looking out for your fellow AN'ers.... and for your continued showing of respect, patience and understanding to those that surround each of us during this AN journey.
I thank you all...... and hope each and every single one of you are fine today... and if not, the line forms behind me. :)
thanks again,
Phyl
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I applaud the passionate discussion in this thread and to everyone who participated!! Truly an amazing group and totally caring for all the ANers on this forum! THANK YOU SO MUCH!!!
- Mary
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Interesting,
Dr. Sam was one of my contacts when I thought I was going to have surgery at HEI. He was very informative and helpful to me. Mark has alway behaved as a gentleman. The world changes and new technology becomes available.
I for one chose CK because I did not feel comfortable with some of the outcomes of this surgery. My AN was near my facial nerve and already doing some damage. I didn't lead the life style to involve a long recovery if I could help it. When I told the doctor at HEI (won't mention the name) he sent me some really outdated and miss information reguarding radiation. I was very dissapointed in the response. I very much admired this surgeon. If anyone would be allowed to open my head it would be him. However, the record is not perfect even with him. I was in contact with a gentleman who was supposed to have surgery the same time as I was and he went early. His outcome for a suppposed simple AN and recovery did not live up to his expectations or the surgeons. Nothing and no one is 100% all of the time.
I was so fortunate to have an experienced neruosurgeon who practiced on the West Coast. She does all sorts of treatment. Surgery, CK and GK. I ask why the surgeons were so slanted and pushy toward surgery. She said "Would you ask a Ford dealer if a Toyota was the right car for you?". Her only point now is just keep going back to your neurotologist and show him what your out come is. This is also the remark she made to a coworkers husband who also had CK for his AN. Keep going, keep showing and things will change someday. In her opinion, radiation will become the treatment of choice very soon for smaller tumors. I ask her if she had my exact same An what would she do? She said it is a personal choice and if she did have she would choose radiation and never look back. Some feel more comfortable with traditional surgery. Nothing to her she gets paid the same amount for either method.
Almost 18 months after CK I can say my outcome was better than I expected. We shall not write the last chapter in this book until the last breath has been taken. I say all of this because this journey is so difficult an we get so much misinformation along the way. I was so sure I needed surgrey that I never even looked into radiation. Especially since my neurotologist, HEI doctor and others kept on the track about malignant transformation of the tumor and regrowth. Thanks to a series of events I decided to look into CK when I had to postpone surgery. I was not pushed, forced or given missinformation from the radiation oncologist or my neuro surgeon. Both said the choice was mine and you are lucky to have the option.
Some times lttle debate is good for us. Hugs to both Mark and Dr. Sam.
Sandy