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AVM Survivors Network

Cyber Knife at Johns Hopkins


#1

Aloha everyone! Thought we'd share our recent experience with the Cyber Knife Treatment my husband had from Johns Hopkins. Just a little background, after getting an MRI for his severe migraines, they bumped into his AVM and was diagnosed back in October 21, 2014. His AVM is 1.1 x 0.7 cm in his right parietal lobe. After going back and forth between brain surgery vs. radiosurgery, my husband opted for the radiosurgery as it is less invasive, less painful and less recovery time, especially that we're about to have our first baby in 3 months. For the newly diagnosed patients, I know how hard it is to decide especially if your neurosurgeon and 2nd opinions were not as helpful as you would think they would. For our case, we were told by several doctors that either brain surgery or radiosurgery are the recommendations for treatment and the ultimate decision is my husbands. Everything is on a case by case basis, and I would recommend jotting down all the pros and cons from financial aspect to severity of AVM before deciding, unless of course your doctor decides for you.

It took my husband a few months to decide but he finally did it. Attached is the picture from his Cyber Knife procedure at Johns Hopkins. By the way, for those who have been debating, we were told by a patient from Johns Hopkins that there's not much of a difference between Gamma Knife vs. Cyber Knife. These are merely the 'brands' and the difference is within the mask they use to strap the patients head down. Johns Hopkins now uses Cyber Knife although you will still hear some employees use the term Gamma Knife out of habit. His treatment was done in April 6, 2015. Now we'll have to cross our fingers and keep faith that it will be obliterated hopefully before or at least at during the time frame they provided. Also just to add, my husband did not have any major side effects after the treatment. He said he felt a little fuzzy on the target area but it could also be psychological, but it was definitely nothing major. Although we were told the symptoms could appear within weeks to months following the treatment, hopefully they won't be as bad.

81-IMG_9037.JPG (1.31 MB) 82-IMG_9039.JPG (657 KB)

#2

Hi Carla, Thank you for this informative posting and for including the pictures. Best wishes to both of you. Also, I hope you have an easy delivery. As a mother of a 23 year old daughter and an almost 26 year old son, I am so excited for you!


#3

Thank you so much Susan! Your kind words are definitely appreciated :)


#4

Thanks for the update, Carla. Nice to have the treatment over with. Wishing Charles swift and sure healing!


#5

Carla- thanks for sharing! I had cyber knife done that same day. Doctors told me it has a slightly lower risk of serious complications. No side effects so far. Glad I got to keep the mask! Best wishes to you both.


#6

thank you so much! definitely a weight off the shoulder to get this treatment over with.


#7

thanks for the best wishes! glad to hear you have no side effects so far. I hope it stays that way and hope that yours and my husbands AVM gets obliterated soon! :)


#8

Hi. Could you please tell me what are the side effects they warned you that might appear ? This is the treatment the DR. Recommend for my
12.5 years old daughter , and I’m not at all content with that. We are now seeking for more option

Thanks


#9

Carla,

Thanks for posting all the information about the procedure here and the suggestion to jot pros and cons down when talking to the doctor.

As someone who has had one of each (one craniotomy, one gamma knife procedure) I can say that at least the initial treatment of radiation is much easier to deal with.

Best wishes for complete obliteration and zero complications!


#10

Hi Hope, I understand your worry. The side effects they have told us to watch our for is dizziness, migraines, fatigue and tingling in his arms. And if it's the type of migraines that are unbearable and medication cannot handle, then it could be a possibility of brain swelling in which at that time we'll have to run him to ER. So far he's only had dizziness the day after the treatment but it was nothing that lasted more than a minute. He also had a migraine which lasted for an hour 2 days after but regular tylenol was able to make it go away.


#11

Thank you so much Shirasaya!!!


#12

thank you for the helpful information