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tualatinavm
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Date Joined Feb 2005
Total Posts : 9
 
   Posted 11/28/2007 3:38 PM (GMT -8)    Quote This PostAlert An Admin About This Post.
I have a large avm deep in my left temporal lobe and had 4 embolizations in 2004 and 2 cyberknife treatments for my birthday in April 2005. Now it is 2.5 years later and I have continuted to lose my peripheral vision in both eyes (now at 50% in each eye), and although I have not been tested, my hearing has changed in the last year. No physicans yet to say why things are getting worse, versus better. Does anyone have any experience of this or seen a website to help improve peripheral vision and hearing? Woud appreciate any thoughts. And the short term memory loss could be my age (51) or the radiation.
Thanks much,
Debbie in Oregon
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radsrus
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Date Joined Jul 2004
Total Posts : 7510
 
   Posted 11/29/2007 5:27 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
It is really not possible to comment with any degree of confidence because we don't know enough about your AVM and its treatment. It sounds like it was probably pretty large. That increases the risk of radiation damage and decreases somewhat the chance of control with radiosurgery. You should have a sit-down with your CK team and see what they say.


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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tualatinavm
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Date Joined Feb 2005
Total Posts : 9
 
   Posted 11/29/2007 8:09 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
Dear Dr. Medbery III: I live in the Portland, OR area, and Stanford is no longer on my insurance. Having a sit down with Dr. Chang is not quite possible. I was prepared for brain swelling, headaches, for side effects after CK, but I do not remember any other discussions of other side effects. I was hoping this site might provide more experiences or a list of other side effects from ck on the brain. I heard from a lady this morning and she had the same treatments at Stanford and was told she might lose some hearing and she did. That piece of informatioon is emotionally helpful to me for some reason.

I have sent my new MRI to Dr. Chang but that was this week so it probably has not arrived yet. And when his office contacts me, it really is out of the kindness of their heart, as there is no billing.

Thank you for your response.
Debbie in Oregon
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radsrus
Registered Member

Email Address Not AvailablePersonal Homepage Not AvailablePrivate Messaging Not AvailableAIM Not AvailableICQ Not AvailableY! Not AvailableMSN Not Available
Date Joined Jul 2004
Total Posts : 7510
 
   Posted 11/29/2007 11:15 AM (GMT -8)    Quote This PostAlert An Admin About This Post.
But Dr. Chang is the one who knows what you had and what was done. THe side effects are not generic. They depend heavily on the size, location, and shape of the AVM as well as the method of treatment. I know DR. Chang well enough to know that his not getting paid is not going to preclude his giving you his best opinion. That is why I suggested talking with him. At the time of the above response, I did no know where you were treated nor by whom, and did not have the information that you were in another state.


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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