So I had my first consultation about radiation treatment yesterday and have signed my consent for gamma knife. Does anyone have any advice for how I should prepare for it?
Hi hanc189, there isn’t a great deal you can do to prepare for gamma knife other than making sure your diary is empty for a couple of weeks after the treatment. if you have children, like me, then make sure you have good back up to help out with their care and talk to your employers about possible time off. after my treatment I was really fatigued and just didn’t have the energy to care for my children so my family helped out a lot. everyone reacts differently to the treatment so you may feel absolutely fine but it’s difficult to tell. I went through quite bad anxiety after and this is completely normal but I wasn’t warned so thought I was be going mad! just make sure you give yourself the space and time to recover, if you need it.
Good luck
caroline
Also, sorry I meant to say, check out your driving status. I could drive after my treatment but if your avm is in the brain, like me, it depends where in the brain it is. mine was ok but gamma treatment can mean you can’t drive for 4 weeks after if it puts you at risk of a seizure.
Best wishes for your gamma, hanc189! May you have a swift and sure recovery.
I was hoping you would have more replies. I have scheduled my Gamma for 11/19. It seems really scary, but I'm finally going to do it.
Hi, as others have said - not really much you can do to prepare. I had my husband with me all day, and really needed him there because I was scared. Though it is very uncomfortable, it went very fine. Make sure to get pumped up on drugs as soon as you get to the hospital, so you don’t have to deal with the anxiety. I too was very fatigued and light sensitive the first two-three weeks after treatment, but am fine now. Though I must say that my energy level is a bit reduced compared to earlier, and I sleep a lot more. But on the other hand I did normally not sleep more than 5-6 hours before, while I am sleeping 6-8 now, so maybe nothing to complain about 
I can feel that something is happening around the AVM after the GK treatment (4 months ago). When I am tired I have the sound of a running truck engine in my head and I frequently get this very sharp, strong pain sensation where the AVM is, but it only lasts for a second or two. Don’t worry too much - you will be fine
Hi, hanc189,
I had gamma in March, and I also had a craniotomy many years earlier. I have to say, compared to the craniotomy, the gamma was a walk in the park. A not fantastic walk in the park, but still, a walk in the park. One of the best things you can do to prepare is ask your doctor to give you something to help with anxiety that you can take the night before the procedure to help you sleep.
If you can get a good night's sleep (or at least a semi good nights sleep) it will be a much easier day for you on the day of gamma. One of the nicest things about gamma is that there's relatively little pain. The most painful thing for me about my gamma was getting an I.V. If you can tolerate that, you're golden for the rest of the entire thing.
The waiting around wasn't a lot of fun, because I'm one of those Let's Just Git 'Er Done! type of people. I went in at 6 in the morning and went home at 4 in the afternoon. On the other hand, when I went in for a craniotomy, I went home 4 months later. (There were complications during my craniotomy.)
I also was not thrilled with the part where they put the frame on me and then sent me back out into the waiting room with a huge metal frame screwed into my head looking like Frankenstein to sit with a bunch of people I didn't know for a couple hours. I'm not a particularly vain person, but it was pretty embarrassing to be sitting there like something out of a B rated horror flick with a group of people I didn't know from Adam who looked awfully normal.
After the procedure (I wonder how many people request "Beastie Boyz" to be played while they're getting gamma knife done?) I wasn't in any pain. It was a walk in the park......wearing highly inappropriate clothing.
If you think you'll be anxious, ask for something to help manage it; they'll most likely give you valium or some other anxiolytic to take the night before and the morning of.
Best of luck, we're all pulling for you! Once you're done, let us know how it went.
I have my treatment later on this week. Thanks for the support and advice everyone, it really is appreciated. They have advised that I will be given some medication the day before treatment so I am hoping that calms down my anxiety. Luckily my partner will be with me throughout so I'll have some support with me. I shall update once I'm back home and rested :) As my AVM (aka Roger the lodger) is on the left rear side of my brain unfortunately that can effect my vision so I won't be able to drive for 4 weeks.
x
Fingers crossed for you Lisa. Mine is this Friday. Let me know how you get on.
I currently get a sharp pain around that area, and that is where my migraines sit so I am used to that. I'd love more sleep so I'd definitely be happier about that :) I too am going to have my partner with me as I'm anxious about it all.
I've been trying to make a joke that I'll look like darth vader haha, humour is keeping me going through it at the moment! Beastie Boyz? good choice!
Did you have your Gamma? Please let me know how it went. I hope all is good and Roger the Lodger is disappearing. I am going on Friday to get mine done. And I will not be able to get meds the night before, so let me know how that went.
Hi, so sorry in my delay replying to you. I had it done on 13th November. Just starting to experience side effects, my hair started to fall out last week :( but I'm hoping it will grow back soon enough. How did yours go?
Weird, they told me my hair would not fall out. But on Monday as I was washing it, I got a handful, and then again on Tuesday. But I have had just minimal. I'm hoping it's over now. How much did you lose? Can I ask what your side effects are? I've been extremely tired, more than before and headaches in the top of my head. A little tingling also, that seems to be where the hair was coming out. How long was your actual radiation treatment? Mine was 64 minutes, I don't know if that is a long time or not. I hope you are doing well.
Hanc,You might want to discuss this with your dentist as radiation is hard on your teeth.
As time has gone on, i'm getting more tired and have become more sensitive to light and sound so it's sometimes difficult driving in these dark mornings and evenings. I don't know the exact measurements of the hair loss as it's the back of my head, but at least 6cm by 3cm. There are two patches but thankfully my hair covers it up. I think it is starting to grow back as it's starting to feel a bit prickly, which is always a good sign it's healing quickly.
My treatment was 55 minutes. The length of treatment all depends on the size and depth of the AVM so I think that's probably average time for the procedure. I'm doing ok but my migraines are becoming more frequent and basic painkillers aren't really touching the pain when it does happen, so I've booked in with my doctor for start of Jan to see what they can advise.
Hope you're ok!
Pjnsbrgh, surprisingly enough my teeth are doing ok, in fact better than they were before the op. good idea to make my dentist aware though
Thanks for updating. It's nice to hear what's going on with you since you had yours right before me. Hope everything is well with you. keep me posted!