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AVM Survivors Network

Post Radiation Therapy & Post AVM; Radiation Necrosis and Brain Swelling TREATMENT


#1

Hello All! It has been so long since I’ve posted. Not sure if anyone has been following my story or previous posts, but I had to pay it forward with my experiences and how much I owe this support form. I recommend reading my previous posts to get a full backstory.
Long story short, I was diagnosed with a 4cm AVM in 2016 on the right temporal lobe, I got 3 large doses of cyber knife radiation to treat it. One year later in July 2017 I found out my AVM was obliterated (fairly quickly which is abnormal, probably an indicator i had too much radiation). I was on steroids for an entire year after my radiation treatment due to severe brain swelling and radiation necrosis as side effects from cyber knife. I gained over 50 lbs being on these dexamethasone steroids that were barely keeping up with the brain swelling/edema. They kept saying stay on steroids and wait it out. That was doing nothing. I had serve headaches, lost part of my left vision, the list goes on. Nothing was stopping the swelling and spreading of radiation necrosis. One doctor had mentioned getting Avastin IV infusions to stop the swelling and necrosis but my insurance denied it TWICE because it is typically used for cancer patients. Although it had been proven to help other similar cases to mine.

UNTIL… I was searching through this support group forms. I had already been active on this site, seeking answers and answering others questions. I found a woman on here named Mary from Virginia who had almost identical symptoms and problems as me. She found a very small clinical trial being held at Norton Brownsboro Hospital Louisville, Kentucky. This trial used the drug Avastin, injected directly to the brain where the necrosis and swelling was located to stop the necrosis from advancing and reduce brain swelling. (direct injection reduces the risks and side effects of Avastin by not doing the infusions where it goes through your entire body…this is a direct injection via angiogram). She gave me the contact info for the lead doctor, I got in touch with him, and the rest is history. I flew out a few months later and got the procedure all covered by the clinical trial. Within weeks the headaches stopped, and 3 months later scans revealed my swelling and necrosis was slowing and stopping. 6 months later I had returned to my full normal self. Over the last year and a half I have lost all the weight, and I have no symptoms of ever having an AVM or radiation all thanks to this clinical trial using Avastin and thanks to this support group.

Some people are skeptical of the Avastin, rightfully so, not all medications work for everybody and everything comes with risks. BUT, i beg you all to keep your options open and an open mind. It was my last option for relief and to stop the radiation necrosis and brain swelling. And I found this option on this form and inquired about it and it saved my life. I owe those doctors my life.
I just wanted to put the information out there in case it helps someone else, maybe someone will find it when they need it just like I did back then. I went through hell, and no one should have to go through it.
I will leave several links below referencing the trial.
Thank you all, best wishes, keep hope, and I love you all.


#2

It is great you stopped by and even better to hear how well you are doing! I recall clearly the challenges you had, you certainly battled and the result now is great! I’ll certainly be reading those articles! Thanks for checking in with us and hope to hear more from you! Take Care, John.


#3

Thanks so much! And for sure, anyone that has any questions can always reach out to me regarding my AVM and/or cyberknife experience so I can help others.


#4

Good to here that things are going well now. Was taken to Louisville when my rupture happened. Was in Frazier for my surgery and therapy but was taken to brownsboro for my test and MRI scans. That was the one complaint was I was transferred from hospital to hospital.


#5

Alyssa,

I agree with John, you went through hell a year or two ago. You were clearly having the toughest time. It is fabulous to know you’ve got through it.

Well done! It’s great to hear!

Very best wishes for 2019!

Richard


#6

Thanks so much. Hope all is well now!


#7

I remember you from years ago and its nice to see your post, hope you are doing well and things are good. Take care.

Martin.


#8

Thank you, and you as well!