Last Thursday I went to Mass Gen to get the little metals balls put onto my skull. I will have Proton Beam done this Friday. I’ve already had the mouth mold and head brace adjusted for me. I also had a CT done last Thursday.
Dr. Chapman said that I will have to take Ativan for a couple of days after treatment because there’s a chance of seizures, but I’m not too concerned. I think all my family is really worried about this. I’m not. Is that weird? Should I be concerned? I’m just really anxious to get this all done and taken care of. I’ve been advised that I shouldn’t drive, I apparently have quite significant peripheral vision loss, but I don’t notice it…well, maybe a little, but it doesn’t bother me.
Resa, I had this treatment done by Dr. Chapman three years ago. Welcome to the Hole in the Head Club! lol Seriously, I was also put on an anti -seizure drug for a few days before as well as a few days after the proton beam. I did not have a seizure. I was mostly tired. You should be prepared for some hair loss though. About a month later, a fistful of hair at each location that was zapped. In my case, that was three locations. Believe it or not, that was the most traumatic thing that had happened to me up to that point! “Ah, vanity, thy name is woman!”
Resa, Anytime you want to talk, please feel free to contact me. My e-mail is ■■■■■■■■■■■■■■■■■■■■■■■■. Just put AVM Survivor in the subject line. Good luck on Friday!
Resa, You are moving forward in a most positive manner looking forward to the best positive result. I admire that about you. Your strength, determination and positivity will take you all the way in this…
I wish you smooth sailings…You and yours are in my thoughts and prayers.
To me, a funny thing happened at MGH when Chari did PBR about 1992. You assembled at MGH, then got in a cab for the ride to the reactor. At the time, the actual treatment was done in this warehouse/lab type of building where the nuclear reactor was (might not be the same place now). As we walked into through a back door, I noticed a garbage can FULL of empty beer cans and throught that was unusual, but didn’t say anything.
Over the course of the week we were there for all the pre/post stuff, we kept bumping into two other couples, who we later found out were on the same track as us. We finally connected in the waiting area for the treatment.
The other man went first. When he was done and Chari went in, he and his wife, along with me, moved to the post treatment waiting area (really just an office in the building). I was able to watch Chari’s PBR on a small black/white TV video hookup, with no sound.
So with the three of us in there, a lab tech (reactor driver maybe?), asked the man if he’d like something to drink: Coke, water, beer? The man said “I think I’ll have a beer!” So the tech got him one from the frig.
I was never sure if Dr Kjellberg (the PBR DR at the time) ever knew the lab techs were giving his patients cold beers following the treatment or not!
Did you have embolization first? I had two and tomorrow I go for a consult with the Doctor that’s going to do my stereotactic radiation. Is the proton beam invasive??