Author Topic: Lost, totally lost  (Read 6378 times)

okiesandy

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Re: Lost, totally lost
« Reply #15 on: December 01, 2005, 12:52:31 pm »
Kilroy,

How nice of our insurance companies to be so interested in our well being and quality of life. I am sure mine had my best interest at stake when I had to cancel my surgery with HEI. I was given the option to go with a couple of local surgeons that have the compassion of a Bull Moose. However, it has been a blessing to me because I had not considered radiation at all.

After interviewing several local surgical patients and not finding one that came out of it as I would wish to be post surgery I started interviewing radiation patients. All were very upbeat and open with why they chose such a treatment. One lady had a failure and said she did not regret trying it. She later had surgery without facial problems. I went to a radiation oncologist who did not try to push me into anything. He took my MRI's before a panel of neuro surgeons and oncologist and a neurotologist that does both. It came back as I could have either GK or CK or surgery only if I felt I really wanted it. At about that time I got on a site called Cyberknife Patient Support. I started talking to a local radiation oncologist and set up an appointment with him. What a difference from the Neurotologist's I had been to. He did not see a thing wrong with surgery and explained the difference in CK and GK. He does both. Again my films were reviewed by a panel and I was a candidate for either GK or CK surgery was not reccomended.

When I went back to my neuro and told him I was going to have CK. His eyes turned cold and he said I am sure you will be just fine.  We will talk about it just once more then I don't want to ever discuss it again. He simply said it is not without risk or side effects. It fails 10% of the time (not the same figures I had found).  How will you ever know if it is malignent ? I ask him if he had ever had one that was cancer and he said no. The oncologist says no way is it cancer, I think the oncologist would know best. This man said he could do my surgery with out a neurosurgeon if I wanted. Yikes, why would I want that?

Kilroy, please get on the cyberknife patient support site and ask all the questions you want, the doctors will get back with you quickly. Dr, Chang does surgery and CK. Dr.Medbery does both CK and GK.  A wealth of information is there for the asking.

Sandy
Cyberknife 1/2006
Clinton Medbery III & Mary K. Gumerlock
St Anthony's Hospital
Oklahoma City, OK
Name of Tumor: Ivan (may he rest in peace)

CC

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Re: Lost, totally lost
« Reply #16 on: December 03, 2005, 11:16:47 am »
Kilroy

I won't add too much to this already long debate other than to say that I understand HEI microsurgeons and Stanford radiosurgeons often accept whatever the insurance comapny would have paid had you gone in state or to their recommended doctors.  I'm supposeduly "fully covered" to have whatever I like wherever I like with whomever I like.  One of the bills from my treatment was $40,000.  My insurance company offered them 20% of this and they accepted!  So if you're particularly wedded to a certain doctor or form of treatment ask them if they'll accept what the insurance company offes them.  You may be pleasantly surprised.

Finally the only thing I'll add to the GK/CK debate is to say that GK uses cobalt radiation usually administered over one treamtent.  Stunningly deadly to the tumor but can have a spray effect sometimes damaging healthy stissue.  Also is a  little invasive as requires the use of a frame bolted to the skull.  CK uses x-rays (but quite different from a microwave) administered over a few days.  Their theory is that healthy tissue is given a chance to recover between treatments. Because the computer programs the radiation to avoid healthy tissue (or give less of a dose) the potential for healthy tissue damage is reduced.  Both CK and GK have excellent rsesults at tumor necrosis and hearing preservation. 

Good luck
CC
CC
3cm AN
CK Oct 05
with Dr Chang at Stanford

Kilroy1976

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Re: Lost, totally lost
« Reply #17 on: December 05, 2005, 10:27:51 am »
Both of my local doctors referred me to Shands at the University of Florida, and insurance caved in. I'm having radiosurgery (linac) there, either next Monday or Tuesday. It's good to have a date and I have confidence in the doctors at Shands, both because they have an excellent reputation in these parts and because they did an outstanding job on a tumor my sister had.

I want to offer my sincerest thanks to everyone in this forum. I can't express how helpful you have been to me and how grateful I am that there are so many good people out there. God bless you all.

-Kyle
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

Nancy Drew

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Re: Lost, totally lost
« Reply #18 on: January 12, 2006, 04:09:21 pm »
Kilroy, I think I understand your situation because I am also confused about which treatment if that time comes.I have 4x5 mm AN and presented with dizziness (or vertigo?) also.I am in the wait and see mode for now.It sounds like you need to get another opinion.Red flag to me is when a doc says there is only one way to go.The doc I saw was open to all of the options, but he said Gamma Knife could be the one since he has seen good results, especially with the smaller tumors.But, I do find myself going back and forth, and I know this is a big decision to make so I think it is best to keep checking it out.I will probably get a second opinion if it comes the time.But, gosh is it hard to figure it all out especially since I'm just in the beginning stage.Also know that I might not ever need treatment, but still it will always be in the back of my mind.Feel free to email me-- nscooper31@att.net.Best of luck to you and to all of us who are confused.And I admire all of you have been through treatment one way or another.
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