I had my Proton Beam done on Jan 16. It went fairly easy. Quick and painless. The aftermath…Not so good. I was told that I would probably get a headache, which I am totally used to, but I got the worst headache of my life. I literally thought that jumping off a building might actually feel better than the pain I felt in my head. It was HORRIBLE. My husband ended up calling an ambulance to have me taken to the ER on Saturday morning because I was NOT doing well. I don’t remember a whole lot that happened that day. I remember them giving me Dilauted and then telling me when I woke that I could call someone to pick me up when I was ready. They gave me a prescription for some painkillers and sent me on my way. My head continued to hurt soooo bad. I didn’t know what to do. So, I called my general practitioner and told her she had to do something. I couldn’t live this way. I couldn’t stay awake for more than a couple of hours at a time. She said I probably had some minor brain swelling from the radiosurgery and prescribed me some steroids and gave me more Vicodin. I’m finally starting to feel more normal. Now I just have my regular annoying headache. I can totally handle that. I’m still pretty tired, but I try to nap any chance my kids will give me.
You’re on your way Be sure to stay in close contact with your neurosurgeon and (even better) your neurologist. My neurologist became my GP for 2 years after gamma-knife, I went to him first. Better to visit the specialists if you can for the time being.
I am so sorry to hear about your ordeal. Before my doctors diagnosed my AVM, I had 2 LPs done to check for abnormally high spinal fluid. After each one, I had the most horrible, I want to die headaches that lasted for 3 weeks. I couldn’t move, they were so debilitating. I will never in my life forget the pain from those 2 headaches. My deepest sympathies go out to you!! I appreciate you blogging on this as I, too, will be going for protpn beam treatment in another month and am not sure what to expect. This will help me be prepared. Thank you!!
Resa- Glad the treatment went well, sorry to hear about the aftermath! That doesn’t sound the least bit fun If your GP was so nonchalant about the fact that there could be swelling and gave you steroids, I’m surprised that they weren’t given to you immediately post-op as part of your recovery. It sounds like (at least the GP thinks) this swelling would be common after the procedure. But I don’t know anything about PB…it just seems logical. Glad that you got some more Vicodin and are starting to feel better!
Hang in there. Sleep is good!
Yeah, I was told by the neurosurgeon that that was a possibility but that it doesn’t happen all the time. So they said if there was a problem to just go to my doctor because he wasn’t going to be on call over the weekend. So when I went to her, she immediately called him and then they confrence called me to let me know what they were both thinking.
Resa, im so sorry to hear about the headache. good to hear that you are starting to feel better and the proton beam went well.
Hello Resa, you brave and strong woman. Excellent and hard work you are doing…I am so sorry you had to suffer such pain. So you are better now ? I pray you have smooth sailing even in the stormy seas and that you heal fast and be well. Sleep and rest are under-rated and so necessary for our brains to heal. Perhaps bribing the children to “rest” with you ??
Be good to you. Take care of you. You and yours are in my prayers Resa.
Hi, Resa. I’m so sorry that you had to go through all that pain! I remember that my head was extremely tender for a little while aftewards in the areas where I was zapped, but nothing like you had! About eight months later, the excruciating headaches started for me!
Sorry, I hit the ADD COMMENT button too soon! lol I’m glad that you are starting too feel a little better. Please keep me posted on your progress. There aren’t a whole lot of us “proton beamers” on here! lol
Resa,so happy you are dong much better!! connie is rite,not to many proton beamers in here, happy it is over and was not to painless the treatment! :)get well,rest ok
Sorry to hear you had to go through all that.I hope everything keeps getting better from here on in. Feel Better!