Has Anyone Had Radiation To Cure AVM?

My Doctor is giving me the option to have radiation or to have the AVM removed can I get some information if you have had it done before.
Please

Hello vanessa,
Unfortunately for me radiation was my only option. My docs at UCLA told me that my AVM is too deep to do surgery. I had radiation In July 2010. I experienced fatigue and some hair loss in the spots where the beams were aimed. I did have a loss of appetite as well. Unfortunately for me after the radiation I have had additional bleeds. I had a small on in December 2010, and another at the end of May/early June of 2011. For my most recent one my docs decided to perform a partial embolization. Even though he’s offering and giving you the options of which one you’d like to have, I hope your doc is also going into detail about your options. I hope this helps and please feel free to contact me with any other questions you may have. I hope I’ve helped even a little. Take care.

Thank you. My doctor is at USC and he said he was talking to some at UCLA also. He is giving me details about which procedure i can have done and he is still going to have another conference with doctors next week and then he will talk to me about the options i have. The only reason i would want to have surgery is to remove it and get it over with and move on. with radiation im scared that it will affect me in the future long term.
thank you for your help <3




Jessica Ables said:

Hello vanessa,
Unfortunately for me radiation was my only option. My docs at UCLA told me that my AVM is too deep to do surgery. I had radiation In July 2010. I experienced fatigue and some hair loss in the spots where the beams were aimed. I did have a loss of appetite as well. Unfortunately for me after the radiation I have had additional bleeds. I had a small on in December 2010, and another at the end of May/early June of 2011. For my most recent one my docs decided to perform a partial embolization. Even though he’s offering and giving you the options of which one you’d like to have, I hope your doc is also going into detail about your options. I hope this helps and please feel free to contact me with any other questions you may have. I hope I’ve helped even a little. Take care.

Hi Vanessa. You may wish to join this sub-group…
http://www.avmsurvivors.org/group/radiosurgerypatientsgammaknifeother

Vanessa, I’m just curious. Who is your doctor at USC? My aunt also had an AVM (and major bleed) and her doctor was Michael Lawton at USC.

my doctor is Dr.Amar

thank you



Barbara H. said:

Hi Vanessa. You may wish to join this sub-group…
http://www.avmsurvivors.org/group/radiosurgerypatientsgammaknifeother

hi, ive had 2 doses of Gamma Knife over 7 and 3 years, which removed 90% of the AVM, which is amazing, but some of the AVM is too deep. i never had any bad side effects myself.

What is going to happen to the other 10% do you have to have surgery to remove it?

Nothing, its just too deep for anymore GKR, and embolism is just not an option at all. Of course i would like to have the whole thing removed, but when they say that they have removed 90%…certainly better than nothing! Maybe one day things m,ay change. 15 years ago i wasnt even given any chance of GKR so things change.

Hi Vanessa, I had a major AVM bleed back in Feb, 2011 and they performed an emergency embolization which treated 85% of my AVM. The options presented to me by my team of doctors in Boston was (1) Do nothing, (2) Open Brain Surgery or (3) CyberKnife (radiation treatment) to treat the residual AVM. I only needed one CyberKnife treatment because the residual AVM was so small. After the weighing the pros and cons of each option, I decided to proceed with the CyberKnife treatment as this was the less risky option that will hopefully yield an AVM Free result. The down side to this option was that an AVM Free result was not immedidate and can take up to 1 to 2 years to be AVM Free. I had the CyberKnife treatment back in June and only had some minor side effects including fatigue and little hair loss. Like Jessica said, I also hope the doctors are providing you with the pros and cons to each option to help you make the decision that is best for you. Let us know if you have any more questions.

/Michele

Hello Vanessa,
I opted for Cyberknife radiation treatment. The positives for me was that the neorosurgeon is convinced that I have a 90% chance of getting rid of the AVM. I had the treatment in April this year. The downside is that it may take up to 3 years before I know if it has been successful. In the meanwhile I may suffer a bleed. The other positive is that it is the least invasive treatment. I do a scan in October this year - 6 months following the treament. It will be the first indication if the radiation has shrunk the AVM. The treatment itself is very ok. It lasted about 45 minutes. I had to have a number of scans first to aid in the programming of the cyberknife robots. I lost some hair but it has grown back. I did suffer some brain swell but this was fixed with a week course of steroids. I feel very hopeful. I hope it works out for you whatever decision you make. Best Wishes Sean.

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I am in the process of scheduling the radiation treatment and have the angiogram scheduled for August 2. I can’t have surgery due to the risk of comlications but I don’t want to leave it there. Radiation seemed like a good option. People who’ve had it experience some unpleasant side effects but they are temporary. Some have no complications. I for one can’t stand the fact that this is a time bomb waiting to go off in my head. Even if it takes up to 3 years, I am compelled to do something. Good luck.

My AVM symptomized in 2007 with seizures. No bleeding. Surgery was not an option, nor was embolization. With no other choice I underwent stereotactic radio surgery at UCLA under the care of Dr. DeSalles. Today the avm is gone. I still have subtle neurological symptoms and take Keppra to prevent seizures. Side effects from the radiation were not subtle. Initially the treatment just throws you for a loop. I was prepared for this. Later I experienced two separate episodes of serious inflammation, cerebral edema and violent seizures requiring very heavy medication. Strangely these episodes occurred one year and a half after the treatment, at a time when I was feeling very well and thought the worst was behind me.

Now I am quite well and active and above all very thankful that my avm did not ever bleed.

Hi Vanessa,
I drove to USC from Orange County to consult with Dr. Apuzzo and his team at USC. He was recommended by a Neurologist/friend of my family as the most experienced in Gamma and radiation treatments around. If you have your procedure there I’m sure you will be meeting him at some stage. I had GK treatment on 9/14/10 at the USC Gamma Unit. My AVM is about the same size as yours and I’m approaching my 12 month checkup. Feel free to shoot any questions to me, I did a ton of research before I let anyone touch my noggin. :slight_smile: take care

I had radiation therapy, I was given the choice of coil embolization but decided there was too there was too much risk of stroke
I underwent Gammaknife on May 11 2011, I experienced severe facial swelling for a week afterwards and extreme fatigue for
2 months, I have also lost most of the hair behind my left ear. This procedure was the safest approach, I avoided any chance of a stroke