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Joined: 9/30/2009
Posts: 32
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OMG,, I am just so amazed!!! I happened to scan through the locations that offer cyberknife in the States. In comparison to Canada which has only ONE in Quebec (and try and get someone to speak English to you,, NOT!)....
The USA has them all over!!! Even in the veterinarian hospitals!
It is a crime how much more advanced the USA is. When I mention cyberknife to people here, they look at me like I have lost my mind and ask why I just simply don't get radiation. WHY do I want to go to the States? They have no idea how beneficial it is.
I sit here typing at 4:30 in the a.m. because I cannot sleep as my mind is constantly racing when I lay my head down.
I just want to say that you are VERY fortunate to have at your fingertips what we have only ONE of. On top of that, it is so new I would not think they would work on my tumour anyway.
Attempt number 20 of falling asleep...... sigh....
5.60 cm X 4 cm vagal schwannoma and I'm losing control one millimetre at a time.
Supposedly in-operable, but I beg to differ.
www.allinonepetcare.com What I LOVE doing!
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Joined: 10/11/2008
Posts: 525
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There are almost 20 Cyberknife facilities now in Florida alone, and three in the county where I practice (Palm Beach County).
Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828 Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717
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Joined: 9/30/2009
Posts: 32
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Sure sure sure,, rub it in Dr. J. :) I am jealous ...
I feel better about it all now, I actually got some sleep afterwards. I went to bed FINALLY knowing what I'll be doing.
THANK YOU RICK (Phil says so too!!!) for helping me make my decision. It was in your last post that did it for me! "Why not try this... least invasive, and IF it doesnt work for me, then there is always surgery afterwards." Plus the constant No-Brainer remarks helped too... lol lol Because I have a brain!!! :)
Dr. M, THANK YOU for your constant info and support also!
I actually feel like I have a big weight lifted off my shoulders.
Now I have to wait to talk with the clinic I'll be going to... Maaaannnnnn.... they are 3 hours behind me!!! WAKE THEM UP so I can call them!
5.60 cm X 4 cm vagal schwannoma and I'm losing control one millimetre at a time.
Supposedly in-operable, but I beg to differ.
www.allinonepetcare.com What I LOVE doing!
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Joined: 11/7/2009
Posts: 6
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If you really want treatment in the states you (meaning your GP) can apply to OHIP in advance and see if they will cover it. They will likely tell you to go to Montreal, however you could easily site the language barrier, and the fact that Montreal has only had their CK since September 09 (lack of experience).
Your GP would have to make it very clear the advantages of having CK vs Gamma.
Good luck.
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Joined: 10/11/2008
Posts: 525
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Vive la difference.
Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828 Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717
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Joined: 9/30/2009
Posts: 32
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I'm hoping Montreal wouldn't even want to CK me as my tumour may be too big for them as they are new to it.
Also, I am not sure how OHIP goes, but Montreal is a different Province, so I'm thinking, what is the difference between another province OR another country in terms of coverage.
Beforehand, I KNOW this is not going to be easy,, or maybe it will.. but I am prepared for anything... in the meantime,...I have questions.
#1 Since it is large, and swelling does/may occur; what are the possible complications? It has displaced both my carotids and jugular so with a vagal schwannoma that is already up to the jugular foramen what other things may I face.
#2 What swells.. the tumour it'self OR the areas around the tumour? How will this affect a person...
#3 When I was considering surgery for a bit, I was requested by the surgeon to get a 4 vessel angiogram of the neck to the head. Do I still need to keep that appointment now that I'm getting CK?
# 4 Sorry to sound ..dumb, but what is the difference between gamma and CK... and is gamma readily available in canada???
I will obviously be asking these questions once I get to the doc in the states, however, I would like to be more informed before going. Thank you...
Rhonda
5.60 cm X 4 cm vagal schwannoma and I'm losing control one millimetre at a time.
Supposedly in-operable, but I beg to differ.
www.allinonepetcare.com What I LOVE doing!
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Joined: 10/10/2008
Posts: 1435
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It is really best to get these answers About specific risks and side effects from someone who has experience in treatment and has seen the scans. Otherwise, everything is pure speculation
Gamma Knife uses 201 cobalt sources pointed at a single point, so you must move the patient to different positions to cover a tumor. It is basically limited to the head. A new version goes down into the neck, but a lot of centers are reluctant to use it because of immobilizatin concerns. Gamma Knife does not image during treatment, so alignment problems are not picked up. It is fine for intracranial cases where you can get rigid immobilization. It requires single fraction treatment, which can be disadvantageous in some cases.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 9/30/2009
Posts: 32
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For reasons of arguement for me to have CK instead of Gamma.. IF they raise that issue with me... I have just been doing some Gamma Vs. CK on google.. and..
I have read that Gamma does not work on tumours over 4 cm. Mine is 5.60 cm and growing. :)
The one article would not say it was Because of CK but they did say that since CK was introduced, the longevity of cancer patients has increased.
Also Dr. M,,, it would be great to get some answers even without seeing the scans as some are just general questions of cyberknife and some symptoms/reactions that have been observed.
(Beautiful sunny day up here in cottage country in Canada!!!)
5.60 cm X 4 cm vagal schwannoma and I'm losing control one millimetre at a time.
Supposedly in-operable, but I beg to differ.
www.allinonepetcare.com What I LOVE doing!
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Joined: 11/7/2009
Posts: 6
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Hi Petgroomer,
I didn't realize you had such a large tumor. I am also on the ANA site and saw your posts there. I am also considering surgery out of province, that's why I told you the information above. I remember reading now, your situation is unique enough that you should be easily covered in the U.S. or Montreal.
It is the same process. I spoke directly to OHIP and they explained the process. For me I have to be able to convince them that I can not get the same procedure here in Ontario. That is my battle with them. For you, you definetly can't get it here in Ontario. Email me if you like and I will direct you to the site. If you choose to try this option, you need to get prior approval. I'm going to try for certain. Either for surgery or cyberknife.
For the doc's here. I've just begun researching radiosurgery at the behest of my neurosurgeon here in Ont. He wants me to be as informed as possible. I will post another question on another thread so as not to hijack this one.
all the best PG. Nikki
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Joined: 10/10/2008
Posts: 1435
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It is not that GK does not work on tumors over 4 cm. it is just that the risks are too high for single fraction of tumors larger than that that are intracranial.
I am always happy to review scans and give you some sort of informed opinion, but I don't think that "general answers" are a good idea. At best, they are incomplete, and at worst, can be misleading.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 20
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Rhonda,
I'm glad I was able to help you make your decision. I truly believe you will not regret that decision! Not for one second!!!
You posed some questions and I feel I can write with some experience with some of them.
"#1 Since it is large, and swelling does/may occur; what are the possible complications? It has displaced both my carotids and jugular so with a vagal schwannoma that is already up to the jugular foramen what other things may I face."
In my case there was little appreciable swelling or discomfort. As I wrote in my now archived journey..I developed a rip-roarin' raw throat...but w/i a week...it was gone!
"#2 What swells.. the tumour it'self OR the areas around the tumour? How will this affect a person..."
It was my understanding that both areas had that possibility...but will reserve that answer to the Dr's.
The remaining two questions are beyond my scope of expertise! Doctors...you're up!
You'll do just fine...just don't give up and when they "bolt" you down, just remember that Ativan works great! (20 minutes prior!! lol)
Vagus Nerve Schwannoma, 3.5 x 3.4 x 2.8cm...30Gy @Riverview CK May 25, 26, 30, 31, June 1st, 2006 (5 of 5 completed). Dr. Nate Kaufman...NJ's award winning TOP DOC!
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Joined: 10/10/2008
Posts: 1435
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I dont' have much to add. Again, it would require a review of the scans to get more specific.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/10/2008
Posts: 81
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Hey Rhonda... still watching from afar... and sending wellness wishes your way!  Rick.... you just rawk! Hey Nikki! Watching as well... Dr. M..... heck, no good words for you....  Phyl
=============================================== 1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of April 2006
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