Help

avm only shrunk 9mmm by 3 mm…since gamma knife 2 years agao…what does this mean…for us…it seems to still be active…last reports dont meation obiverlation? any advacne on what to ask next at doctors or even expect?

Hi Lori,

As you likely know, one of the downsides of radiation as a treatment for AVMs is that it is SLLLLLLLLLLLLLLLLOOOOOOOOOOOOOWWWWWWWWWWWWWWWWWWWWW to work. Safe, but slow.

I’m not familiar with gamma knife specifically (wife had proton beam radiation twice). With it, yes you could have 2, or maybe even 3 treatments if needed. A lot depends on the dosage they used, etc.

Obvious questions I guess are Should I have GK again? Are there other treatment options I should consider? Should I just wait and have it check again in 2 yrs?

I’m not sure anyone can promise complete obliteration in 2 yrs with radiation.

Hope this helps.
Ron, KS

Hi Lori… My avm has needed 2 gamma knife treatments, one in June 2007 and second one November 2010. For my avm (located in left temporal) there was no “big” change until the end of the 3rd year. The first 2 yrs there was no change. So even though its hard you might not see much of a change until the end of your 3rd year. Its also possible you might need a 2nd treatment. Best of luck~~~~~~ Andrea


Hi Andrea,

I had my angiogram last June 2010, more than a year after my Gamma Knife treatment. The doctor said there was change in size but based on the result and in my understanding, there was none. This is my second year after the Gamma Knife. I'm so scared to have an angiogram again. In the Philippines and in our status of living, I don't know if we can still afford to have a 2nd gamma knife treatment.

We hope and pray that God will have mercy on us.

He knows what's best for me and my family.

Cherry

Andrea Fisher said:

Hi Lori.... My avm has needed 2 gamma knife treatments, one in June 2007 and second one November 2010. For my avm (located in left temporal) there was no "big" change until the end of the 3rd year. The first 2 yrs there was no change. So even though its hard you might not see much of a change until the end of your 3rd year. Its also possible you might need a 2nd treatment. Best of luck~~~~~~ Andrea

Thank You to all those who have responded....to you especially..i am lucky...i am not paying for my daughters treatment...its free through the state(aka..a bit poor on this end)...so a blessing truly. I am also glad to hear its normal for an AVM to be stubborn, but now at least i know my road has no end it sight instead of not knowing!...I will continue to fight ..for her life!

Best Regards

Lori

Thank you for your reply....with gamma the dosage is so intense u can only have 1 every 2 yeras...the docs said another cerebral angio is nest step to see whats really soing on??????,,,,mra & mri have a hard time picking up blood flow...aka,,the ink dye with angio...why didnt they just do that last week when we had the mri & mra..more waiting..requested to see another specailist a nuerophycoligst....some one else suggested it on the site for the behavioral issues..best of luck to you & yours



Ron, KS said:

Hi Lori,

As you likely know, one of the downsides of radiation as a treatment for AVMs is that it is SLLLLLLLLLLLLLLLLOOOOOOOOOOOOOWWWWWWWWWWWWWWWWWWWWW to work. Safe, but slow.

I'm not familiar with gamma knife specifically (wife had proton beam radiation twice). With it, yes you could have 2, or maybe even 3 treatments if needed. A lot depends on the dosage they used, etc.

Obvious questions I guess are Should I have GK again? Are there other treatment options I should consider? Should I just wait and have it check again in 2 yrs?

I'm not sure anyone can promise complete obliteration in 2 yrs with radiation.

Hope this helps.
Ron, KS

My Neurosurgeon told me Gamma Knife can take 2-3 years to work, if it works at all! He said AVM's are still somewhat of a mystery and the treatments are all but trials to see what works.

I hope the next year brings some improvement.... I wait to see what's in store for mine!

Good Morning. The AVM that I had took almost 4 years to completely obliterate. I was having MRI's e every 6 months and Angios every year. It can be discouraging because it does take time. But have faith.

God Bless ALL!

Lori

thank you…more info the better…we do angio again 3/11…so see what it brings…at least i am learning the right questions to ask…i find the doctors almost get…hummmmed…i ask is it obliverated (1/19/2011) and he looks at me like…okay…the angio…i want risk factors…up front…tired of things sneaking in(like the cerebral edema after 1st gamma knife…poor girls brain had shifted 7mm to the left)…so keep me informed…thanks again…millions…best to you as well!

Andrea Fisher said:

Hi Lori.... My avm has needed 2 gamma knife treatments, one in June 2007 and second one November 2010. For my avm (located in left temporal) there was no "big" change until the end of the 3rd year. The first 2 yrs there was no change. So even though its hard you might not see much of a change until the end of your 3rd year. Its also possible you might need a 2nd treatment. Best of luck~~~~~~ Andrea

ty…best to you…

Loretta H. A. said:

Good Morning. The AVM that I had took almost 4 years to completely obliterate. I was having MRI's e every 6 months and Angios every year. It can be discouraging because it does take time. But have faith.

God Bless ALL!

Lori