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AVM Survivors Network

Gamma knife

Good luck Monday! I’m new here so I hope it’s ok to jump in and comment. I too, had unpleasant experiences with angiograms. Nothing really went “wrong” it’s just that they triggered nasty migraine type headaches both times I had them. Neuroradiologist said that’s not uncommon, but it made me wary of other procedures. It’s understandable, one uncomfortable medical experience leading to anxiety about the next procedure. But fortunately I didn’t have a bad time with gamma knife treatment. It was really OK. No complications and the time went by quickly despite being wait-listed behind more urgent cases. The discomfort of putting the halo on and off wasn’t fun, but it was quite tolerable (and I’m not all that stoic). They gave me a mild sedative and they use a local anesthetic so it’s just a few little punchy pains where they stick the needle. And the sedative made me not mind the restraint. The staff were the right balance of kind and professional so I felt in good hands. The angiogram was more physically uncomfortable (even minus the migraine) and more invasive by far. But in the end they’re both tolerable. It helped for me to remind myself that I could endure many discomforts and fears in the short term, for the gain of symptomatic relief and treatment of the lesion and reduced risk of complications in the long term. The one thing that did turn out to be worse than expected was the bruising and swelling after I went home. They said I could go back to work as early as two days. Ha! I could barely open my eyes by then. My face was all puffy and bruised which took a good week to settle down enough to go out. And the spots where they attached the halo felt bruised for weeks. But even with that, i felt like gamma knife was not a terrible experience.

Hey there! I’ve had gamma knife twice. I know this is scary to say the least. But it certainly is a more timid medical procedure than a craniotomy! I’ve had that too. Just relax and try to imagine you’re in an episode of star trek! Gamma “knife” is no cutting involved but you will do great! Here’s a video: https://youtu.be/7ScVu-ZGfu8

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I don’t think anyone has welcomed you to our group as of yet! So on that note welcome! We always welcome comments, and experience wether new or veterans of the site. We all have so much to add from such a wide array of perspectives, its a lot of our “safe place” to talk about things most don’t understand. Take Care, John.

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Thank you so much for the welcome John. Tomorrow I go for my follow up cerebral angiogram so I’m a little nervous at the moment. Glad to have found this group.

Catharine

CharlotteLouise, best of wishes for you for Monday.
I had GammaKnife back in September of 2008. I don’t remember much of it since I was sedated. I’ll echo everyone here and just say to relax.
Post surgery, be sure to listen to your body if it’s tired. I hope that helps.
Again, best of luck. Please keep us posted.

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So, how did it go? Hope you feeling well today and wishing you success in your treatment.

Catharine

Dear folks, I had gamma knife in 2016 treating my AVM.Since then I am totally healed vein malformation gone and I am at full power and healed.I recommend this great instrument for anybody having neurosurgical issue.

Thank you all for your replies. I got through my gamma knife fine. It wasn’t a pleasant experience but I am so glad it is done.
My AVM is on my occipital lobe (vision) and once a week my vision goes completely blurry for around 30 minutes. I had my gamma knife done on Monday and my eyes have gone blurry on Wednesday and again today (Friday). The last time my eyes went blurry before treatment was Saturday so that means this week my eyes have gone funny 3 times compared to my once a week. I’m not sure if this is normal or how long this is going to go on for but I am hoping this stops really soon. Did anybody with an occipital avm experience similar? Thank you x

Charlotte,

I had scintillating or negative scotomas for a few weeks after my embolization and between me and another member here, we put it down to irritation from the contrast material.

So, if yours are similar, they will become less frequent until one week, I hope you’ll realise you’ve not had one for some time. However if they don’t fade away or last longer than 30 minutes or so, definitely talk to your doctor.

Hope this helps and well done for getting through your treatment!!

Best wishes

Richard

See here my description of my visual disturbances post embolization.

And the link to scintillating or negative scotomas here

Thank you so much for your reply! On Monday (the day of treatment) I started feeling sick and dizzy after the treatment and I am still the same today. I am dizzy, keep feeling like I am going to be sick, light headed, so tired and I have to be on painkillers 24/7 for headaches and pain from the frame. I am wishing the days away just so I can feel like myself again. It hasn’t even been a week yet but I am so inpatient and just want to feel better. I hope you are well

My pleasure!

I am sure the contrast material messes with your brain and, other than your screw fittings (which I think are very uncomfortable) I’m sure most of your discomfort is from the contrast material clogging everything up, a bit like a bad hangover.

However, if you continue to feel poorly, talk to the nurses. I assume you were given a specialist nurse phone no to ring for any questions.

I’m sure you’ll get there. Honest!

Yesssss!!! A very bad hangover is how I have described how I feel! That’s exactly it. Except I missed the fun bit which is the night before.
I do have a number for the radiosurgery team and if I am still concerned next week I will give them a call just to put my mind at ease really. Hoping it passes very fast! Also hoping one day I might find some patience!!!

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Does your blurry vision start small and grow? Does it cover part of your vision? If so, it sounds like a scotoma of some sort and I hope will become less frequent as the contrast material is dispersed. It took several weeks for mine to go away.

It starts where my eyes blur a little bit but then really soon after that like less than 5 minutes both eyes are completely blurry and I can’t really see much. It covers both eyes all over. I used to get this once every 6 months and then it started once a month and now it is usually once a week but since the treatment I have already had it twice and had it just 2 days before the treatment so 3 times in a week is a lot more than usual for me. Before my Avm was discovered I thought these were migraines I was having as when my eyes go blurry I always get a headache pain behind my right eye

Scotomas are often a migraine “aura” but I would guess yours are driven by your AVM. The contrast material has probably upset everything and/or the radiotherapy has. The fact that they grow from a small area and last no more than 30 minutes sounds like a scotoma to me but if it goes on for longer than we think or you’re worried about them, it is always worth asking the neuroradiology nurses. I do think they usually don’t block out all sight. For me, it was just the central vision really. Peripheral vision stayed there (though you don’t actually see much detail with your peripheral vision). I can’t exactly remember how much of my sight was affected but it sounds less than yours.

Keep an eye on it! :laughing:

Yes it does only usually last around 30-40 minutes. Occasionally it can last quite a bit longer but that isn’t very common for me. I have experimented when my eyes go ‘funny’ and tried covering up different parts of my eyes and looking different ways and it seems to effect every single part of my eyes. It is an awful feeling every time my eyes go ‘funny’ and it makes me dizzy and makes me feel sick. I’m starting to doubt myself now wondering if I made th right decision to go ahead with gamma knife. I have been feeling very anxious since I had it done and can’t sleep at night because I have heart palpitations with anxiety and I am scared to sleep incase it bleeds in my sleep. I am such a worrier. So sorry about my dramatic self

Ok. It might all be “migraine-related” so not necessarily something to worry about. It’s just that your migraines are triggered by your AVM.

Migraine is an amazing thing. As I said in the post that I linked, I was reading “Migraine” by Oliver Sacks. He describes all sorts of things that can be part of migraine “aura”. The dizziness and the nausea may be part of it. I know someone for whom fear is a symptom, and I remember reading it in the book. I can’t remember if dizziness or nausea are common, so it would be best to say to talk to the neuroradiology specialist nurses about it, as they will know, whereas I am guessing. But it wouldn’t surprise me if they said it might just be aura, especially if the feelings are only at the same time as the scotomas.

Main thing… don’t worry about it. It’s probably completely benign. But talk to the nurses to check.

Oh, and never doubt yourself. It’s completely normal. If you look at my thread that I shared with you, I was doubting myself at exactly the same point as you but it’s normal and not to dwell on. You have to go with the decision you made, not regret stuff like this. You had a tough choice to make and you made the right choice. It’s very early days, you know? Chill out. It’ll be fine: it does take a long time, though, so you’ll do well to grow a bit of patience.

I’ve just googled and dizziness and nausea are common effects of migraine (rather than the aura) so probably just your brain taking exception to the disruption it has undergone. However, as always, if you are worried talk to the nurses.

I hope that you are recovering well from the procedure. I have experienced something similar to what DickD is describing, and am hoping to get a bit more clarity (bad pun) from Mayo when I visit again in November (2 years post surgery). I’ve experienced a number of incidences of lost vision and disorientation since my procedure, two of which prompted me to go to the hospital (primarily out of fear that I had suffered another bleed).

In addition to what others have mentioned, I had numbness in my skull for several months after the procedure, which was more strange than really problematic (it’s hard to believe that my body reacted to the local for so long or that they had something so powerful…).

I would say I felt pretty minimal effects from the procedure afterwards otherwise, though. I found it helpful to share on here about my experience (although it took me a while to do so), in part to help normalize to some extent what was occurring.

Wishing you strength

Brian

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