My Gamma Knife Experience

Hi guys, i went into hospital for my first (and touch wood hopefully last) GK treatment on Wednesday just gone, as you can imagine the nerves where high, i felt pretty emotional and there was most definitely a lack of sleep the night before but I’m pleased say 4days post op and so far I’m doing ok. My day was as follows; 4:30am last chance to eat something, fasting for the op begins, I’m a foodie so I was up and munching toast and drinking tea, 5am wash my hair, it’s gunna be a few days before I will be able to do that again, 5:30 taxi to the hospital, 6:30 go up to my room, 7:00am prep from the nurse (cannula (IV) in) and a chat with my consultant, 8:15am step 1, the dreaded frame fitting :frowning: so this was the thing I was freaking about most but actually it wasn’t too bad, although they do say women have a higher tolerance to pain then men lol. I kept my eyes closed for most of it, diverted my thoughts to chilling on the beach and could hear my husbands comforting words (he was allowed to stay in the room with me) I’m not gunna lie I felt each needle go in but to be fair after about 10 seconds no pain just a feeling of tightness and the lidocaine had kicked in, 4 needles and no tears I was well proud of myself, then came the bolts, i had no inclination at checkin these bad boys out, (my hubby told me about them the next day) so these attach the frame to my head and are screwed in, again I zoned out to a happy place, I felt pressure in my head for about 10 mins, not painful but definitely uncomfortable, best way to describe it…imagine an earthquake and the plates of the earth moving, kinda similar in your head as they tighten the bolts the plates in you head move and create pressure. So I now have my funky frame attached :slight_smile: I sit in the chair and the radiographers place what look like a salad bowl with cut out circles on my head, they take measurements for about 10 mins, then place two plastic square box’s on to my frame (these would be used thoughout the day for MRI,angio and GK steps) they take some more measurements, everything is logged and will be used to help with my GK planning treatment later in the day. I’m now starting to feel ok, the pressure is subsiding, yep the frame feels weird and I keep wanting to touch it but I was doing ok. Step 2 we move to the MRI machine, this room has some serious moodlighting, nice and calming :slight_smile: I am injected with dye into my cannula, I imagined the dye to be blue/black or some colour but this is actually clear stuff) i receive a cold feeling running through my vein but not painful, I lie on bed of the MRI machine and my frame is attached to the bed alongside two outer plastic boxes so I can’t move, I little uncomfortable but bearable, my scans last about 20 mins, all in all not bad I have had longer scans :slight_smile: so now step 3, the angio, this procedure entails a small cut in my groin to gain access to the femoral artery, a catheter is inserted in, fed through and directed towards the avm area in the brain, a contrast dye is then injected into the catheter and X-rays are taken that will show the blood vessels in your brain, all the X-ray pictures are co ordinated in relationship to the head frame measurements. I had an angio back in Dec when my AVM was first discovered, it didn’t really hurt and didn’t have any bad memories from it but for some reason lying on the table I felt more scared about having this than I was about the frame fitting…the surgeons where chatting with me, normal stuff, funny stuff, relaxed stuff and then I felt the tears out of no where, their they where, rolling down my cheeks :slight_smile: no hysterics or sobs just rolling tears, the guys in theatre where great moved the X-ray plate out the way and gave me time to chill got me laughing and had me back on track, unfortunately due to scar tissue from the previous angio this one was a little painfull :frowning: and took a little longer but they thankfully they did it and got my head shots :slight_smile: so now I have to lie on my back for 5/6 hours to allow the femoral artery to clot up (top tip dont forget to go for a bathroom break before your angio) I get transferred from the surgical bed to a trolly and wheeled down to the gamma knife unit step 4, I’m transferred from the trolly to the gamma knife bed, the radiographers (who have stayed with me throughout the day) are still about, as is my husband, we all chit chat and laugh around I’m kinda feeling relaxed now this is after all the easiest part of the day. They mentioned In my pre admission pack I could bring in a cd or iPod to listen to whilst having my gamma knife treatment, which was nice, i filled my ipod full of random happy music from jazz, hip hop, classical and Bhangra, the guys hooked it up and i could hear my tunes being played through the speakers in the gamma knife machine, after about 20 mins of planning the consultants decided on a 86min gamma knife treatment plan with 9 adjustments, my head locked into position, plastic boxes attached, final measurement check and i said bye to the radiographers and my hubby, it was just me and the GK machine, the doors opened and my head slid in… There are no flashing lights, you dont see any beams and there is no movement other the slightest adjustments as part of the GK plan, I drifted away listing to my music, even nodded off for a few minutes :slight_smile: I honestly thought I would struggle lying still for 86 mins but it went really fast, before I new it the bell sounded, my head slid out and the doors of the GK machine closed and that was it, job done, I’d had radio surgery woo hoo!! Last step, step 5, removal of the frame, Ok so this did hurt, I was moved from the GK bed to the trolly, I still had to lay flat due to the earlier angio, the plastic boxes are removed, a radiographer lifted and supported my head, the surgeon start to unscrew the bolts, now i feel the build up of pressure in my head and a kick ass headache :frowning: the pressure lasted for about 20mins, those plates in my head have to move back to their original positions, i feel a sense of relief, the frame is off. The pin sites at the front of my head are ok but the back two are extremely painfully, I’m taken back up to my room and given paracetomol with a light lunch not that I’m up to eating much :frowning: the pain in my head is intense, I try to fall asleep but it’s hard, 3 hours later I had to ask the nurse for the hard stuff, I needed pain killers, I’m allergic to codine so I move up to tramodol, yep there are side effects but isn’t that just the way it is with everything…at the time I didn’t care I needed to calm the immense pain at the back of my head… 20 mins later peace, no more pinching or piercing, no more pain. Phew. 10pm i was knackered and started to fall asleep but the night ahead was pretty rough I kept waking up every hour my head felt heavy, i felt really sick. by 5.30am I was feeling feverish and ready to chuck up, I called the nurse, this was the effect of the tramodol :frowning: she gave me an anti sickness injection and paracetomol, finally my fever reduced, the sickness started to disappear and I managed sleep for 3 hours. Breakfast came and went, my surgeon popped in to check on me, she was really cool, said the sickness was due to the pain medication and not the GK treatment, hopefully I would feel better later, if so I could go home or if I wanted to stay another night I could, I fell asleep again woke up for lunch I was surprised how much better I felt, I was able to eat lunch and go for a walk around the ward, I waited a couple hours no sickness, now I was ready to go home… So here I am, at home tucked up in bed, I’ve been sleeping lots and lots the past few days, I have headaches but can keep them controlled with paracetomol.

So am I glad I agreed to GK treatment-yep i am, would I do it again - knowing what I know, as long as there had been some improvement from last time - yes I would.

My avm entails three aneurysms, one of which bled in dec 2011, during the planning of my GK treatment the surgeon and consultant advised they would do there best to capture as much as possible but due to the nature of where the avm, any swelling encroaching my motor functions would leave damage, they did not want to leave my left side paralysed. I will have a scan in 5 months time and we will take it from there… In the meantime I’m planning on getting my strength back and getting on with stuff, there’s loads of ‘stuff’ I wanna see and do :slight_smile:

Thanks for taking time out and having a read, wishing everyone well and sending happy postive thoughts your way xxx

1 Like

I hope you have a speedy recovery :)

Rest, it is natures healing hug.

Hi Gee, hope this finds you well. Just wanted to say a big thank you for posting such an in depth account of Gk. I am due for this on the 25th April and must say I am a bit nervous but yr post has made me feel a whole lot better. I was originally scheduled to have Gk on 14th March but unfortunately contracted MRSA, thankfully antibiotics have cleared the infection and my date re-scheduled. I hope you are feeling a whole lot better,

Kind regards
jill

What a brave women.x iv recently been diagnosed with an avm and have been advised that gk would be the better option due to where avm is. my avm is very similar to yours size and position excluding the Aneurysms the last couple of months have been like a whirl wind. Im scared of what the future holds for me. sorry to rabble on thanks for posting about ur gk experience hope ur feeling well soon .x

Thanks for sharing your experience.

Best wishes for your recovery, keep us posted!