Hi I’m wondering. Are you asleep during the actual radiation? Is the ‘crown’ placed whilst you’re awake? Do they shave your hair? Thanks in advance x
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One more thing, do they do the dye radiography thing whilst you’re asleep? Thanks
of course I’ll ask all of this at the consultation. I’d just like to hear it from y’all first x
Hey, I’m from London 
I had my first angiogram the end of February… I was awake for that but many people on here have said they were asleep so I guess that can be either.
I am waiting to hear what treatment options I have… but while I had my angio, I met a lady in there and asked her about GK as she had it. She told me that everything happens in one day.
You go in and they put the crown/frame on first (and that, that is probably the worst part of the day), then you go for an angio (she was awake), and then the GK (didn’t say if she was awake or asleep - but did say that before the angio MAKE SURE YOU GO TO THE TOILET) because if they go through your groin then you need to be laying down for 4-6 hours (which includes while you’re having your GK).
Hopefully someone else will answer about the GK consciousness, but hopefully what I saod helps a little
Hi, nice to hear from you again! I had gamma knife in 2016 and was awake for the whole day. I went in first thing in the morning and had the frame mounted, or “halo” if you will. They do this with a local and is uncomfortable but not too bad. They gave one of my group a wee relaxer and made it go smoothly for her. I went for a CT scan, then an MRI. They used a previous angio so did not need that on my day. I picked a CD and got the gamma listening to tunes and fairly relaxed, As soon as it was done they unbolted the frame, a couple of band aids and I was walking out about noon. I have been awake for all my scans, the medical people have been great, always. The most uncomfortable was the mounting of the frame, but once on it did not worsen, and when removed was immediate relief.
During my angios, they include a pain reliever in the IV, I had little discomfort. The sealing of the entry point, which was just pressure was probably the most noticeable. On 2 of 3 angios they used a product called an Angio Plug and it was quick. Hope this helps! Take Care, John.
Yes. It does. Thank you Ashleigh x
It does. Thank you
I’ve had two angios. Awake for the first which was excruitiatingly painful and asleep for the second. Nottingham… Norman, intervened in December last year and my migraine pain is hugely reduced. But the AVM and associated aneurysm remain and still require some treatment so Sheffield are going to have a go, maybe. Consultation next Wednesday. Your responses will help me to set my questions. Many thanks x
Norman did me the other way round… Asleep for the first and awake for the second but my first was a combination angio and embolisation. Did he do you an embolisation on the second visit? You said he “intervened”. Would be pretty normal to be asleep for an embo.
It’s most normal to be awake for an angiogram and for gamma knife but it may vary. I think the main thing is to tell whoever you see at Sheffield how you got on with things and I expect they’ll offer you a sedative, like John says.
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Glad your migraine pain is a lot less. It’s good to hear from you!
Hello Yes I was the other way around. Angio then combo angio and embo. Whatever he did has certainly improved things. He wanted to stabilise the aneurysm too but it was 10pm by the time he completed the embo and he and his team had been on the go for 12 hours. He was as fab as you said he would be.
I’ll let Sheffield know, of course, but maybe with the improvement in brain pain it will be ok. I’ll certainly consider whatever they offer. How are you doing? Are you well?
I’m glad you feel like that. I think he’s quite a remarkable man and the relationship he has with his team quite unique.
There are certainly others who have done the embolisation followed by gamma knife for the tiny vessels, so that’s not unusual.
Some people do seem to have the trouble with the pain with the catheter entry point, like you: for some reason the local anaesthetic doesn’t seem sufficient. I’d definitely tell Sheffield that you had that experience and whether you’d like to be “out” or at least delirious for gamma. See what they say! My understanding of gamma knife is that it is often measured in minutes rather than hours, so maybe ask how long they expect you to be under the gun for and maybe something to help you relax will be enough.
Really glad it has made a difference to your headaches! That a real plus!
Very best wishes,
Richard
Had 2 lots of GK at Sheffield. Have quite long hair - they didn’t shave it or cut it, but did put it in bunches to get it out of the way for the frame fitting. The frame on both occasions was fitted whilst awake under local in the four areas where it is secured - it didn’t hurt on either occasion. I was awake for the GK knife on both occasions but the music they offer helps - not because of any pain - there is none, but because it is a bit boring. A word to the wise though - the first time I asked for '60’s and the selection was not good, the second time I chose '70’s and it was much better so if you are choosy about your music, take your own cd. I was also awake for the angiograms, (I’ve had a bout 3 or 4), with the dye which again have been fine, although the lying flat for four hours is annoyingly boring, but not painful, just necessary. I did have headaches after the removal of the frame but a couple of paracetamol fixed it quickly. I will just add that on both occasions I found the staff in the stereotactic radiosurgery team at Sheffield, professional, informative, and supportive. Wishing you the very best.
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Ahh, no, I’ve misled you. The pain was not the catheter point at all. First time was groin second was in my wrist. That didn’t bother me at all. The pain was in my head and occurred with the injection of the dye. It was excrutiating. I was so relieved that the second Norman did whilst I was under for the embo.
Dill, thank you. That is all, particularly the music heads up, very helpful. x
Interesting! We had someone else recently who really struggled with the dye. It made my head hot and occasionally gave other effects (can’t remember what effects now) and was unpleasant but very transitory for me. Since he was able to predict exactly the feeling I would receive in each location, I take it that it has different effects on different parts of the brain. I’m sure that is pretty normal. However some people are actually allergic to the dye and that causes longer recovery (and ideally either selection of a different contrast material, or some other pre-scan medication). If you have a further angiogram, worth discussing with the doc the effects you had and whether any accommodations are needed.
Size may also be an issue - when I had my first angio. the doctor said I would experience pain and heat when the dye was injected but I did not. Afterwards, I questioned my lack of pain and heat and he said that this was probably because the AVM was so large that it completely absorbed the dye and did not therefore affect the surrounding area in my brain.
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That’s interesting. I had an arteriogram as a teenager and the contrast dye then was painful too. I’ll definitely mention it. Thank you
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I see, so it might be relative. Thanks Dill.
I had my Stereotactic Radiation on my AVM at Sheffield. I was awake throughout the whole of the procedure. They first did an MRI and then an angiogram. The cage was put on my head first thing in the morning. They didn’t shave my hair at all, but if it’s long you’ll need to tie it up. The area where the cage is attached to my head was numbed first with a local anaesthetic. The radiation does not hurt at all. I felt no sensations at all. Good luck with it all. I know it seems scary, but honestly there’s nothing to worry about. Take care.
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