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  #11  
Old 11-24-2007, 10:43 AM
Richard G Richard G is offline
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Join Date: Nov 2007
Location: North East England
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Default Radiation therapy advisable?

I've just seen your query re radiation therapy. I am approaching 60 years old and have a fairly large AVM in my left cheek and in the corner of my mouth. I had radiation treatment during the 1950's (when I was about 8 years old). The after-effects at that time were awful - hallucinations, sickness, etc. I imagine that treatment would be more refined nowadays.
The treatment did seem to reduce the overall size of the lesion but when I went for further examination about 12 years ago, an angiogram seemed to show that the blood systems were so tangled and intricate that, at that time, no further treatment was recommended. I am due for another examination in a month's time.
I was interested to see that some experts nowadays state that radiation is not a good idea and do hope you get sound advice when you have to make your decision. All the best!
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  #12  
Old 01-29-2009, 03:40 AM
songbird songbird is offline
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Join Date: Jan 2009
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Hello, I am new to the group, but not new to the problems that we are facing. I am a 54 yr old woman, married with two healthy sons that are also married. I was born with an avm, told it was a hemangioma and had several surgeries throughout my life. The AVM continued to grow in size and location! Most of mine is internal on the right leg and lower back. Also, there is the right arm that is involved as well. What I am facing is similar to your problem, no surgery is left as an option, and sclerotherapy isn't an option as well because the avm is too complex and too deep. I had radiation as a infant and as a child. My parents were told that this was to be a great help. Well, of course it wasn't and the pain is something I can't describe.
i am currently undergoing pain management therapy which consists of taking narcotics and it makes my life somewhat better. My problem now is dealing with some lung issues. I have been told that the avm will possibly grow into the internal organs. GREAT NEWS!? I really don't know what to think about this new phase in my life. I will be going to the lung specialist tomorrow. The testing that I have had shows that there is nodules in the lungs and along with the PFT (pulmonary function test) shows the numbers are very low the verbal assesment is possibly pulmonary fibrous.
Needless to say I am confused and don't know what if any the role of the history of the avm will play with this possiblity at all.
Does anyone have any experience like this? Has anyone ever heard of this?
I have had to use the information from this site to take to drs. from my state to Duke University, and Cleveland Clinic to make them fully understand my circumstances.

HELP PLEASE! My name is songbird...............i have no new song to sing!
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  #13  
Old 01-29-2009, 04:43 AM
nickbar nickbar is offline
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Join Date: Aug 2003
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Please email Dr. Rosen, Dr. Berenstein, Dr. Konez, Dr. Fishman.... all are great resources for AVM's thru the ask the expert on the main page of this site. Also, Dr. Yakes in Colorado is a great resource. It is important to have specialists that have extensive experience with avm's to be reviewing your case. Advancements are always around the corner. I would also like to connect you with Linda Rozell Shannon the founder of this foundation. Email me and I will let you know what I find out. I need to see if we can share some new studies that are showing promise in this area.

Please don't give up hope. Please keep us posted
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