First, I want to make one thing very clear: I really like my doctors. I have complete trust and confidence in their skills and abilities. Dr. Kresl and Dr. Willis both have excellent communication skills and caring support staffs. The doctors are not condescending; they treated me with complete kindness and honesty. They admitted that my treatment was no guarantee of healing; I appreciated the frank discussion. Thankfully, they are also very experienced in the treatment of cavernous angioma bleeds. I felt very comfortable with our decision to move forward with Cyber Knife radio surgery for my brain stem lesion. My husband and I knew there were no guarantees to the outcome of radiation, but we both agreed the treatment was better than doing nothing.
My treatment would include steroid use and 5 sessions of high-intensity radiation used around the perimeter of the lesion. To prepare for the treatment, I needed to be on steroids until the edema surrounding the lesion was reduced. It was necessary to get the lesion down to the smallest possible target area.
After a few weeks of steroid therapy, I needed a planning MRI. This scan is used in conjunction with a CT simulation to design an exact plan for radio surgery. I needed to have a plastic mask made---a mask specially fitted for my face-- that was also used in the planning portion of the surgery. The mask also has holes on the side so that during the radiation, your head is held in the mask.
I am not claustrophobic, thankfully. The plastic mask is quite fitted, but because it has holes in it I was not too uncomfortable.
Unfortunately, my brain stem treatment had to be postponed because the planning scan showed I had experienced 3 additional bleeds. I had 2 new bleeds in the supratentorial region of the brain; I also had a second bleed in the brain stem. I was completely unaware of these other bleeds, as I had no significant symptoms from any of them. It is by God's grace and mercy that I had enough steroids in my system--- I theoretically should not have survived another brain stem bleed.
On January 23, 2014 and on February 12, 2014, I had both left and right supratentorial lesions treated with Cyber Knife radiation. I remained on steroids during this time.
It is my understanding that Cyber Knife is generally not recommended for treatment of cavernous angiomas. Dr. Willis says that regular (invasive) surgery is generally recommended for accessible, symptomatic lesions. In my case, because all of my lesions are inoperable (too deep to access), Cyber Knife is used to cut off the blood supply to the lesion so that it shrink over time. In the case of a brain stem lesion, the radiation treatment serves to cauterize the lesion so that it theoretically reduces the risk of re-bleed. Since these are fairly new procedures, not a lot of information is available on re-bleed rates.
My treatment would include steroid use and 5 sessions of high-intensity radiation used around the perimeter of the lesion. To prepare for the treatment, I needed to be on steroids until the edema surrounding the lesion was reduced. It was necessary to get the lesion down to the smallest possible target area.
After a few weeks of steroid therapy, I needed a planning MRI. This scan is used in conjunction with a CT simulation to design an exact plan for radio surgery. I needed to have a plastic mask made---a mask specially fitted for my face-- that was also used in the planning portion of the surgery. The mask also has holes on the side so that during the radiation, your head is held in the mask.
I am not claustrophobic, thankfully. The plastic mask is quite fitted, but because it has holes in it I was not too uncomfortable.
Unfortunately, my brain stem treatment had to be postponed because the planning scan showed I had experienced 3 additional bleeds. I had 2 new bleeds in the supratentorial region of the brain; I also had a second bleed in the brain stem. I was completely unaware of these other bleeds, as I had no significant symptoms from any of them. It is by God's grace and mercy that I had enough steroids in my system--- I theoretically should not have survived another brain stem bleed.
On January 23, 2014 and on February 12, 2014, I had both left and right supratentorial lesions treated with Cyber Knife radiation. I remained on steroids during this time.
It is my understanding that Cyber Knife is generally not recommended for treatment of cavernous angiomas. Dr. Willis says that regular (invasive) surgery is generally recommended for accessible, symptomatic lesions. In my case, because all of my lesions are inoperable (too deep to access), Cyber Knife is used to cut off the blood supply to the lesion so that it shrink over time. In the case of a brain stem lesion, the radiation treatment serves to cauterize the lesion so that it theoretically reduces the risk of re-bleed. Since these are fairly new procedures, not a lot of information is available on re-bleed rates.
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