ANA Discussion Forum
Archive => Archives => Topic started by: carolk on March 13, 2006, 11:20:35 am
-
Hi All,
I plan to send my MRIs out for some opinions and want to see what a center that uses CK has to say. I'd be most grateful for suggestions on which CK centers (and doctors) have the best reputations.
Many thanks!
-
Carol,
I am by no means an expert, but depending on where you live - Barrow's Institute - Phoenix, AZ, Stanford - S.F. ,CA , UPMC - Pittsburgh, PA all have great reputations. I would look for a center that has doctors that have experience with AN and CK. Have you found the cyberknife support group? www.cyberknifesupport.org ? There are doctors who answer questions who could point in the right direction based on where you live - and would most likely be able to give you the name of a doctor too.
Hope this helps! Suzanne
-
Suzanne, great post... you beat me to it! :)
The CK support website really is the best bet for referencing the CK centers around the States. Don't forget Beth Israel in Boston either.... will kepe you all updated on how they do!
-
Carol -- The University of Pittsburg has both gamma knife and cyberknife, but their web site contains this statement: "We continue to prefer the gamma knife for brain radiosurgery." Do not know why this is, would be interested to hear what they have to say about that. After talking with you, I think we're going to seek an opinion from them as well. Jen
-
Carol,
The university of Pittsburgh , like UVA are definitely top centers in terms of radiosurgery. Pitt does have both GK and CK, but as becknell correctly points out they tend to reserve GK for cranial lesions ( which is the limit of what it has ever been designed to do) and utilize CK for the rest of the body ( which is the real breakthrough provided by this machine). Like UVA, Pitt was among the first US medical centers to embrace the GK as a treatment option
From their web site
During UPMC's first 18 years of experience, more than 7,000 patients have undergone radiosurgery in the department's Gamma Knife units. In May of 2004 our center added a third Gamma Knife unit, becoming the only center in the world with three operating units. UPMC physicians have performed Gamma Knife radiosurgery on more than 1,100 patients with acoustic neuroma, a deafness-causing tumor of the sheath of the hearing nerve. Gamma Knife surgery prevented tumor growth in 97 percent of patients, and up to 80 percent of patients retained their hearing on a long-term basis.
Based on some posts from Doctors on the CPSG web site, like UVA, Pitt has a long relationship with the GK manufacturer Elektra which creates some politics that may dictate how they choose to use the two machines
Also from their web site
Professional Training
UPMC Presbyterian is a major teaching center for Gamma Knife radiosurgery as neurosurgeons, radiation oncologists and medical physicists from around the world come here to train. The center leadership consults with the Gamma Knife manufacturer, Elekta Instruments, to build new technologies for the future.
Pitt does appear to use to use CK for some number of brain lesions , but sees it's value as being in other areas such as the spine
from their web site
CyberKnife is the only system capable of performing single session or staged radiosurgery on lesions located anywhere in the body. This is made possible through the use of image-guidance and robotics. UPMC installed the software necessary to begin spinal treatments in 2002 and is now established as the most active CyberKnife spinal radiosurgery center in the U.S.
"Spinal stereotactic radiosurgery using the CyberKnife can now be performed safely, accurately, and effectively. This technique offers a successful alternative therapeutic modality for the treatment of a variety of spinal lesions not amenable to open surgical techniques, in medically inoperable patients, lesions located in previously irradiated sites, or as an adjunct to surgery. The major potential benefits of radiosurgical ablation of spinal lesions are short treatment time in an outpatient setting with no recovery time and good treatment effect," said Peter Gerszten, M.D., M.P.H., Assistant Professor of Neurosurgery at University of Pittsburgh.
The two key GK guys at Pitt are Lunsford and Kondziolka who are extremely well published ( and I suspect) closely tied to GK. Lunsford is the "lars Leskell ( inventor of GK) proffesor and chairman of radiosurgery. Gee, I wonder who put the money up for the Lars Leskell chair? Can you spell Elekta?
From their web site
"The field of brain and body radiosurgery continues to grow dramatically as neurosurgeons respond to the shift of patient care to less invasive, multidisciplinary, and more effective treatment options for patients with tumors and vascular malformations," comments L. Dade Lunsford, MD, Lars Leksell professor and chairman of the Department of Neurological Surgery and co-director of the Center for Image-Guided Neurosurgery.
"As an international training and outcomes analysis site, the UPMC Center for Image Guided Neurosurgery uses the latest generation brain -- the Leksell Gamma Knife -- and body -- CyberKnife -- radiosurgical technologies to enhance patient outcomes and to train the next generation of neurosurgeons and radiation oncologists."
"Our expanded Gamma Knife services will allow us to treat more patients efficiently," adds Douglas Kondziolka, MD, co-director of the center, "particularly those with metastatic cancer to the brain which represent the largest current indication for radiosurgery."
Additional minimally invasive technologies of the center include dedicated intraoperative CT scanning and CyberKnife radiosurgery, exclusively applied to spinal tumors.
Bottom line from my perspective it that Pitt is a great place for radiosurgery, but you would probably be pushed to GK over CK for "political" reasons instead of effectiveness.
The nice thing about radiosurgery is the degree of computerziation and muti clinician team review elimainates a lot of risk as opposed to picking the best surgeon and hoping they are on a good day when you are scheduled. So, in the case of CK, Stanford is the oldest and most experienced but for something as simple ( relatively speaking) as an AN I would feel equally comfortable at Georgetown, BI in Boston, Barrow in Phoenix, etc. Most of these places also have GK but have migrated to CK. It really depends which machine you feel most comfortable with, but I think you could get great treatment at UVA, PItt, Stanford etc.
Mark
-
Wow! Thanks for these most informative posts. I will send out my MRIs and post the doctor's recommendations. . .
all best,
Carol
-
Mark,
Once again, you come through for us! Thanks! :)
Phyl
-
Carol,
I agree with Mark go with the machine you are most comfortable with - I choose CK over GK because of the headframe issue. But if I had no choice I would have chosen GK over surgery. I also liked that CK is staged with smaller doses of radiation and the idea is that it gives your healthy tissue time to heal in between treatments versus one high dose of radiaiton with GK.  Am I explaining this correctly Mark?ÂÂ
It is interesting the different opinions you get on which machine to go with - I got several different opinions from different drs. some seemed to favor what their center had to offer. Interesting! But I went to a center that offers several different options so I didn't feel like was being pushed one way or the other.ÂÂ
Good luck! Also, at one time or another I think that Mark posted an article or website that gave a good explanation of the different machines - search in the radiation section.
-
Carol,
I had CK in Naples, FL and was very happy with the personal contact and interaction. I chose CK for a host of reasons: (1) the head gear, (2) precision, and (3) smaller doses of radiation. I chose Naples due to their: (1) Experience with CK (was fairly rich relatively speaking), (2) Expertise on staff, (3) personal touch, (4) family location and (5) Florida in December...can't beat it! ;D I will be heading for my follow-up next Monday...I'm very optimistic!
Best of Luck in your pursuit of the best solution!
-
Hi distressed,
Like you, I chose CK for many of the same reasons... for me, accuracy was the key since my AN is still left IAC. I had no qualms with GK either since both are available here in Boston. I also liked the idea of fractionated doses (as shoegirl notes) to help give healthy tissue a chance to recupe between doses.
I'm hearing much more about CK now, new centers, etc. Beth Israel/Boston really came through and it turns out they have a close relationship with Dr. Medbery out at Oklahoma City. I also got word of a new CK center at Kennestone Hospital in Metro (Marietta) Georgia. I also received reliable info that Brigham Woman's in Boston as a CK purchase requisition in their books. They have FSR now but I think they are looking to compete with BI here in the NE.
As for me, I'm now 1 week post CK treatment, back at work (more part time but they see I'm doing a valiant effort), minimal (tolerable) affects and actually, my spirits are as high as can be. Booking my trip to France for June, life is moving along and am thrilled with what I experienced last week and looking forward to getting good news down the road (from my MRI follow ups).
BTW, happy holiday weekend to you all!
Phyl
-
Well, this is certainly encouraging...especially after reading the many sad stories from post surgery patients. I am brand new to this as I was diagnosed just this week. I live in central coastal California and know I'm very lucky. Nevertheless, I don't feel quite so given my recent news. It seems Stanford would be my best option. Can anyone help me identify the best doctors up there for the CK procedure? Thanks so much. John
-
Hi John ane welcome! This really is a great forum for anyone that is seeking further info on radio-surgery options and those that are going through or have been through the process.
You are certainly located in prime location for potential radio-surgery treatment! There is Dr. Chang up at Stanford (Cyberknife) as well as Barrows Institute in AZ (I think they have both GK and CK but don't hold me to that.... I have a dr's note for memory issue ;) ) I know shoegirl can give you names of Dr's at Barrow.
I know that since you just received your diagnosis, things may be swirling in your head, but know that we are all in the same shoes and ready/willing to share any knowledge, experience, jokes, hugs, etc. you need. :)
Phyllis
-
Hi John,
Welcome! If you are interested in Stanford, Dr Chang and Dr Alder are who you would want to contact. If you are considering the Barrow's Institute here in Phoenix, I would recommend Dr. Kresl (radiation oncology), Dr. Daspit (Neuro-ENT), and Dr. Shetter or Dr. Spetzler (Neurosurgeons).
Barrow's has several options for radiation treatments. They have both CK, GK, and some other options for FSR.
Please let us know if you have any questions! Check out the radiosurgery section of the forum. Lots of great info! And also the CK support group website. www.cyberknifesupport.org
Best Wishes! Suzanne