Hi everyone, tomorrow I am scheduled to have 3 beams placed in my skull in prep for my proton beam radiation surgery on 6/13 &6/14. I am very nervous about the pain I’ll be in after the Dr. Inserts these beams. Has anyone had this done before?
Louisa…one of our moderators had proton beam radiation done. Ron’s wife (another moderator)was one the original patients for that procedure. I will be praying for you tomorrow. Just focus on the word obliterated!
Thank you Barbara I’ll see if I mesg them and get an idea of what I am in for. Thank you for the “obliterated” encouragement 
Hi there...My name is Heidi and i have had radiation surgery and brain surgery to remove a cavernoma
in my cerebellum. Please know that it is normal to be scared and nervous. But know, that it will be ok. You are in great hands with your doctor and this will all be fine.
More importantly, you will be better off and feel better after all this is done. You will be in my thoughts and just be strong!!!
Thank you Heidi for your kind words. Tomorrow will mark the beginning of my journey to work towards getting rid of this thing that’s in my brain. It’s very overwhelming. I will keep you posted.
I hope you are surrounded by love and support.
Please let me know your first name so i can keep you in my thoughts.
feel free to email me if you want, please know that we survivors are here for you-
we have been there and are living proof you will be ok...i totally understand the overwhelming feelings...sleep well if you can and think positive thoughts tomorrow...this is the beginning of the end...and you will be ok!!
Thank you Heidi. My name is Monica. I just finished getting the beads implanted in my skull. It wasn’t as bad as I thought but now in some pain. It’s a small price to pay to get rid of this thing.
Monica
I am sending you good thoughts and take some tylenol...rest, a listen to some good music, watch a funny movie or go eat chocolate or something decadent
and celebrate how incredibly brave you are!!!!
Thank you Heidi that is exactly what I did last night. Tylenol n I will be really good friends the next couple of days. I woke up feeling a little better today. Will you be in attendance at the AVM luncheon in Boston this weekend? Hope to meet you there.
had no idea about the lunch.(i am actually in the midst of my third bleed in the pons and cannot drive/stay pout long. etc) .happy that you are better today..i am having some worse symptoms and have to go for another mri this afternoon,,,take good care- Heidi
I have never heard of this, why would this be type of surgery be done and what are the inserts? I will pray for you and your recovery!
Hello Zilly, I had beams places in my skull yesterday in preparation for proton beam radiation that I will be having next week. The beams are inserted in my head which are very tiny. They are used to identify which areas of the brain my avm is on during the radiation treatment. Since the brain does not have any bony landmarks the beams will be utilized as the landmarks so that the Dr.s administer the right amount and precise radiation to the avm site. Everything went well I’m just a little sore at the insert site. I read your post about your experience with grand mal seizure after gk. I hope everything is ok and you are regaining your strength back and gettin back to normal life.
Oh Cerebral ticking time bomb! I'm so sorry I didn't get back to you sooner. Yes, I had the 3 beams put in before I had the Proton Beam Radiation. The beams are somewhat painful after they are put in, but I just took Tylenol when my skull hurt. But they are needed for the Proton Beam Radiation so that they can find the exact spot for the radiation. To be honest, I think having Proton Beam Radiation is much less painful than the those that have the Gamma Knife. AND after 2 years, the radiation took my AVM away. Stay strong and if you need any other information, please don't hesitate to contact me! Louisa
Thank you Louisa for the information I was in a little pain but as you said Tylenol helped. It’s been 2 days since the procedure n I feel great. Only uncomfortable feeling I get is when I touch the areas. By the way my name is Monica and I will see you Saturday. I’m sure I’ll have many questions.
Hi! I had the proton beam procedure done at Mass General in January 2006. I'm guessing that you are referring to the beads being implanted? I had a difficult time of it with the drilling . Two of the holes went fine, but one was very painful.
I guess by now, you've already had that part done. I just wanted to tell you that the actual proton beam procedure was not at all painful.
Hi Connie, thank you for your information. I had the beads put in n everything went okay. They are still healing but healing well. I figured after putting the beads in that the worst part was over. After you received the treatment did everything work out or did you have any issues. The seizure side effect is scaring me a bit. I’ll have my procedure next week on 6/13 & 6/14. I’ll keep you updated. Hope all is going well with you.
Hi, Monica. I have been fortunate in not having to deal with seizures except for what I think they call simple partial seizures...involuntary jerking foot or hand; doesn't happen very often anymore.
Unfortunately for me, the proton beam procedure was not successful and my symptoms have worsened in the years since my procedure. I guess my AVM is too large. But I have read about several success stories here!
I'm going to be praying for you and look forward to hearing about your progress.
Love, Connie
Thank you Connie. I am excited and nervous about getting PBR tomorrow. I am sorry to hear that you are still battling with this evil creature ‘avm’. The neurosurgeon told me that due to the size of my avm I might need another dose in 3 years and I might be dealing with this avm for the next 10 years. I hope that it won’t take this long but I’ll leave it in god’s hands. I will keep you updated on my progress.
I’ll say a prayer for you tonight, tomorrow and the next day. Also a prayer for your surgeon, too.
God bless.