Author Topic: Positive CyberKnife Stories Only  (Read 10333 times)

Mark

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Re: Positive CyberKnife Stories Only
« Reply #15 on: June 23, 2008, 11:39:38 pm »
Not saying you have to go to Stanford to get great CK treatment, but Dr. Chang is top notch and the team there is pretty effective at getting any insurance hassles solved from what I've seen, if you want to go there

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

Tumbleweed

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Re: Positive CyberKnife Stories Only
« Reply #16 on: June 24, 2008, 01:05:31 am »
I second Mark's opinion of Stanford's expediency and helpfulness with insurance matters. Scarlett (at Stanford) has been a dream come true, virtually getting all pre-authorizations from my insurance company handled within days.

That said, I recommend you follow up with your insurance company and insurance network (if you're on a preferred-provider plan) after your chosen medical facility gets all the insurance matters taken care of. That's because, through no fault of Stanford, I found my insurance company didn't get everything right. First, although I talked with three different people in the insurance network (First Health), none of them could locate Dr. Chang (meaning none could determine that he was in-network) -- this even though Dr. Chang is included in Stanford's group contract and has exactly the same tax id# as Stanford's (which facility First Health *could* locate/determine as being in-network)! First Health went through a software upgrade last year after being bought out by Coventry Health, and their records have been full of holes ever since. Some of their staff are very dysfunctional and under-trained, making matters worse.

Another problem I uncovered is that one of the "CPT codes" (insurance codes that identify medical procedures or tests) that was supposedly pre-authorized in my case was omitted by First Health in their pre-certification records -- when I called, they had no record of it having been pre-authorized. I have since called Stanford to ask them to kindly request that CPT code be added to the list of pre-authorized procedures for my care (in other words, tell First Health they screwed up and need to add that CPT code back to the list of my pre-authorized treatments).

Based on my previous experiences with First Health, I have no doubt that these problems were caused on First Health's end and that Stanford did their best to get everything settled on the first attempt. (Again, I've had many, many problems with First Health giving me wrong or incomplete info in years past; to my recollection, they have never gotten anything right on the first contact. I have had to appeal two decisions of theirs in the past year alone, due to their incompetence, and BTW I won both appeals.) My advice is: get documentation from your insurance company and take nothing for granted! Get it in writing. That way, if they bill you afterwards for something they said was covered, you've got proof that they're wrong.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Nancy Drew

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Re: Positive CyberKnife Stories Only
« Reply #17 on: June 25, 2008, 05:26:04 pm »
Hey Steve,

Who is this Dr. Medbery?  Do you know of a place that has both CK and GK machines in the same facility?  I would be interested in finding out more info because it would make sense to get the opinion of someone who does both procedures.

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Mark

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Re: Positive CyberKnife Stories Only
« Reply #18 on: June 25, 2008, 06:38:20 pm »
Dr. Medbery is one of the doctors who volunteers his time on the Cyberknife patient support to answer patients questions. His facility, St. Anthony in Oklahoma city does have both a GK and CK. Stanford also has GK and CK and virtually any doc currently using a CK either was trained on or previously used a GK in their career.

If you would like to post a question to him the link is

http://www.cyberknifesupport.org/forum/


his bio is:

Clinton A. Medbery, III, M.D.

 

Clinton A. Medbery, III, M.D.Clinton A. Medbery, III, M.D., FACRO
Medical Director
St. Anthony Hospital Cyberknife Center
Oklahoma City, Oklahoma

Email: buddy@swrads.org

Patient appointments:
Phone: (405) 272-7311
Fax: (405) 236-3888

Dr. Medbery is board certified in both medical oncology and radiation oncology. He specializes in radiosurgery of both intracranial and body cancers and benign tumors. Research interests include the use of the Cyberknife as a non-invasive and rapid treatment of prostate cancer and lung cancer. He also is an expert in the radiosurgical treatment of metastatic disease in the brain, with an experience of several hundred treated cases.
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Nancy Drew

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Re: Positive CyberKnife Stories Only
« Reply #19 on: June 25, 2008, 07:42:00 pm »
Thanks Mark,

That is very good information that you have given me, and I didn't realize that Stanford had both GK and CK.  Do you know if Dr. Chang uses GK to treat ANs?  Surely the GK is used for something or why would it be sitting there (unless it is a comfortable couch for nap breaks!).  Also nice to know about Dr. Medbery and the Oklahoma City facility.  My son is stationed at Tinker AFB in Oklahoma City so that might be a good reason to take a visit over there!  I am sort of overwhelmed at this point with the research.  One minute I am going one way, and the next minute I am going the other way.  I still have time.  However, I am thinking about working my way out of the W & W and into GK or CK.  I am reading a lot of research that says hearing preservation is better if you get treatment when the tumor is small.  I am 49, and I have a feeling that the AN will continue to keep growing.  Perhaps I'll get another MRI at the six month mark instead of the one year and go from there.  Of course, I did lose some hearing along the way, and I want to keep a check on that also.  I thought I had lost some hearing this past year, but I kept convincing myself it was just because I was getting older.  I definitely need to be more aware of changes in hearing.  Thanks for your help.

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Mark

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Re: Positive CyberKnife Stories Only
« Reply #20 on: June 25, 2008, 11:27:50 pm »
Nancy,

I'm not sure how active the GK at Stanford still is in general, but I'm fairly confident in saying that Dr. Chang and others there use CK for ANs pretty much exclusively. If hearing can be saved, then 3 fractions with CK has better odds than GK and if there is no hearing to save and a one dose is indicated, then CK is more comfortable than the halo.

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

Tumbleweed

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Re: Positive CyberKnife Stories Only
« Reply #21 on: June 26, 2008, 09:32:32 am »
Dr. Chang didn't even mention the possibility of GK for me when he consulted me. His recommendation was CK from the get-go. Maybe that had something to do with my case in particular, but clearly they were biased in favor of CK over GK. FWIW.

Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Nancy Drew

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Re: Positive CyberKnife Stories Only
« Reply #22 on: June 26, 2008, 11:03:15 am »
I don't want to put any doctor down.  My doctor is an honor student from Standford, and I am sure he is competent.  Don't know if he has been trained on GK and CK.  A question to ask him.  But, I am sure he is more biased about GK because that is all he has at his facility.  I would sure be interested to see why the GK is at the Stanford facility.  Maybe I will ask Dr. Chang that question.  Just don't understand why Stanford would have both since both are expensive.  What in the heck are they doing with both.  Confuses me very much.  I am sure Dr. Chang is a very competent and personable doctor.  There are a lot of doctors out there like that.  I am going to check the heck out of my doctor before I let him get a hold of my brain!  Sounds like all of you checked out Dr. Chang  pretty well before going with him.  However, Standford is one on the top univerities in the US, and that carries clout and makes sense that they have some of the best doctors.  I think it is very important to feel comfortable with the doctor you see.  Of course, there are some doctors who have no bedside manner, and they are the best in their field.  Thanks for your opinions.  If I go with GK and have success, I hope that I would post here with my positive story.  But, I also know that I might just go my merry way.  However, I think it would be important like all of you who post such positive reports about CK if I would post positive stories about GK if that should be the case.  I am sure I would post here if I had a negative story.  There are some positive GK stories here as well.  Decisions, decisions.  Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Mark

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Re: Positive CyberKnife Stories Only
« Reply #23 on: June 26, 2008, 01:33:47 pm »
Nancy,

I wouldn't get too concerned about why Stanford , or any large teaching medical center, has multiple machines. While most hospitals , especially community based ones are struggling financially and don't have the capital invesment capacity or the organizational "mission" to stay on the cutting edge of technology, Stanford does. The GK is an older technology and was probably put in a number of years ago. CK is newer, was invented by a doc there, and has more versatility ( full body tumor treatment) so that explains some of it. There was an investment in the GK and they probably still use it for some types of treatment, but is being phased out. There are significantly more CK installs than GK worldwide as facilities depreciate their GKs and upgrade to CK for increased revenue flow given the new treatment potential. Bottom line it is more about financial and investment issues than machine effectiveness in treatment for an AN which I outlined in an earlier response.

An interesting contrast is the Univ of Pittsburgh which also has a CK and GK, but there they use the GK solely for intercranial treatments such as AN and the CK for all other body tumors conducive to a radiosurgery treatment. Why? is it a diiference in the machines? Not at all, Pitt was one of the first to use the GK in the US back in the 80's. They have a long and financially based relationship with the GK manufacturer , elektra which creates an "influence" on some of their docs not using CK where GK could work. Doesn't mean there is anything wrong with that other than to simply recognize it is what it is and doesn't address machine capabilities.

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

Nancy Drew

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Re: Positive CyberKnife Stories Only
« Reply #24 on: June 26, 2008, 01:53:11 pm »
Thanks Mark for your reply.  You do seem to be more objective that I may have given you credit.  I just wrote a post awhile ago, and I am sure I am going to get some slams for it.  GK is available to me at what I think is a reputable facility with good doctors.  I am still doing research though.  I might change my mind and have CK.  Just too much info out there to absorb, and I am depleted at this point.  I am glad they have the CK machine because it now offers more options for those who have tumors in places that the GK can't treat.  I was hoping to W & W (and I still can, I guess since my AN is small)  longer because I know there is more and more research coming out every day.  My husband is an engineer, and he said the new TVs at the stores are already outdated as they hit the floor.  New technology is amazing.  But, when you consider you are treating the brain, it can't be taken likely.  I still think that it is the luck of the draw in many more cases than we are being told.  Research is rampant.  I am a social worker, and I try to keep up with the latest research, and I still think some of the old stuff from 20 years ago is just as effective or even more so than what we hear about now.  And, look at the vehicle they put on the moon.  And,  look how far things have come technoloty wise since then, but they still made it to the moon using their slide rules and ancient computers!  Thanks for your comments.

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Lorenzo

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Re: Positive CyberKnife Stories Only
« Reply #25 on: June 26, 2008, 02:29:16 pm »
indeed, and we don't know what they will have five, ten, twenty years down the road. We can only deal with what we have now, regardless of what might come around the corner. Rightly, who's to say that it will be better, worth waiting for? Luck of the draw? More like our own individual circumstances in terms of the AN, and those will have as much influence on the way you will get out on the other side after treatment, as much as the treatment itself. Remember, one never hears nor reads the positive stories of surgery, or Gk or Ck. Most of the people are not here, because they don't have to. Their circumstances were such that they didn't need to be here, or didn't want to. Luck? No luck? Whatever. But one thing makes us all the same, we have no control of who things will work out in terms of recovery.

I'm rambling, sorry.
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

Nancy Drew

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Re: Positive CyberKnife Stories Only
« Reply #26 on: June 26, 2008, 05:09:19 pm »
Ramble all you want Lorenzo.  Isn't that why we are here.  Just think we have to be sensitive to those who are searching and perhaps gentle guidance is what we need the most.  I think for the most part that is what we get.  If I have GK and it works out for me, I hope I have sense enough to come back and tell my story in an appropriate way.  If I say it is the only way to go, then I should be thrown off this site.  If I have a negative experience, then I hope I also have sense enough to come back and tell my story in an appropriate way.  If I say it is not the way to go, then I should be thrown off this site also.

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

yardtick

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Re: Positive CyberKnife Stories Only
« Reply #27 on: June 26, 2008, 08:06:39 pm »
Nancy,

I keep coming back to this site because of the support and friendship I have made.  I have learned so much from reading other's stories.  You are lucky to be a true watch and wait.  Your tumour is small.  Mine was debulked two years ago and I am going to need a nerve graft in the near future.  This forum has been a life line for me.  I laugh, I cry, I cheer, I pray and I am grateful to be apart of this wonderful community.  Nancy the glass is half full.  This is not a death sentence.  Some people like Jan recover with little or no problems.  Some people like Capt Deb end up with horrible headaches myself included, but we are alive and we support each other.

Lorenzo my dear friend, you can ramble all you want.  I for one enjoy your thoughtful rambles!   :-*  Thanks for the TLC today ::)  I needed it!!  See Nancy that's a friendship that I made.  I live in Canada and Lorenzo lives in Ireland. 

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Lorenzo

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Re: Positive CyberKnife Stories Only
« Reply #28 on: June 26, 2008, 10:32:22 pm »
Nancy, nobody is going to throw you off the site for expressing an opinion, however entrenched it may or may not be. There will always be somebody to counter balance an opinion. Be it in a gentle or equally entrenched way. I certainly hope you will come back and tell your story once you had your treatment. It will make this forum that much more effective.

Thanks Anne Marie  :)

Ciao, Lorenzo
« Last Edit: June 27, 2008, 09:31:45 am by Lorenzo »
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

Tumbleweed

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Re: Positive CyberKnife Stories Only
« Reply #29 on: June 26, 2008, 10:59:34 pm »
The GK is an older technology and was probably put in a number of years ago. CK is newer, was invented by a doc there, and has more versatility ( full body tumor treatment)...

Man, am I ever glad I don't have a full-body tumor!  ;) It's bad enough that I have one in my head! To have one that occupies the entire body would be really tough. That really puts things in a more positive perspective for me. I don't feel quite so unlucky anymore.  ;D

Tongue in cheek,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08