Hey everyone,
So I just got done at my follow up appointment to discuss my angiogram results, and they are going to go through with an embolization followed by Gamma Knife (GK) a month later. They’ve told me the risks (stroke, bleeds, blindness) but said that they happened in about 2-5% of embolizations. The AVM is located right next to my optic nerve, and is a 3.5 cm with deep drainage so they aren’t going to be able to just do GK. I’m super scared and don’t really know what to expect, but my interventionist is very confident that he can help my AVM as much as 80%, and he’s also a very careful doc who will pull out if he sees that there is any risk or something that doesn’t look right. With all this in mind I’m still terrified. Will it be much worse than an angiogram? It’s scheduled for as early as next week.
I had gamma knife but no embolization, so quite different than your case for sure. I think being scared is completely normal! I had to choose between gamma and craniotomy and when my neuro surgeon said if it was him he would go gamma, made my decision much easier. I always said I was at peace with my decision, time would tell if it was the right one or not. I trusted my neuro team and was at peace with the decision, it sure helped alleviate the fear, but it was still there!
Thanks for this response! It calmed a nerve with me! Yeah hearing the confidence from my neurosurgeon definitely helped a lot. She said she would trust this interventionist with her own family so that eased up some worry. I left that office completely confident and without concern, but of course I started overthinking and found myself looking at every possible scenario that could happen to me, and of course started reading too much into it…
I had an embolism right after they did my angiogram.
I was one of the rare people that had a stroke but I did recover and I think it was just because they were in my brain too long and should of broken up the Angio and embolism time . I had an earlier massive stroke 11 months prior and was still recovering.
My embolism they choose to use glue and onyx
I can see fine I had 3 embolizations
Do not trust GK alone is too risky
You can DM if you want specifics of why but embolization stops the immediate risk
You have to take a risk at this point
Find a doctor that can do Wada test so you can see if it will affect vision
Let me know how I can help
Embolization can cause stroke hemorrhagic one
I had like one drop off blood in the last surgery head ache for 8 days from 1 to 10 I had 1
That’s it, but I am 
AVM obliterated now
To prevent stroke they do 30%-30%-30%
And then they send you to the ICU and keep you pressure really really low
You can do one embolization and gama Knife but then it can bleed and it takes 2-3 years
There are members here that did no embolization at all and then had hemorrhage and it’s devastating I wouldn’t do that
I would try to eliminate 90-95% or even 100% of this thing straight out the bat
Your risk of hemorrhage is like 2% in the first 24 hours but realistically if you’re not old you should do fine
It’s the best risk vs vs benefit
Thank you so much! This is super reassuring! Do you know what the risk is of hemorrhage when you do embolization followed by GK? He’s going to try to get most of it done from the get go, but they’re pretty sure I’m gonna have 10-20% of it left that they want to use GK on.
Bella,
Hi! Like Angela, I had just an embolisation. My AVM is a dural arteriovenous fistula on the inside of my skull at the back of my head – very much a surface thing but inside the skull, hence getting at it with a catheter.
I think of embolisation as a low impact thing but it isn’t really, if that makes sense. Procedurally, it’s like the angiogram but with glue or coils or other blocking material injected in the right place. It’s done under general anaesthetic, so you don’t need to worry about lying still for ages. In this way it is just fine.
The risks are that they drop a bit of glue and it travels before it sticks, blocking something they didn’t mean to. The other risk is that they go into a narrow artery that the catheter fills completely and you’d have an ischaemic stroke. The other risk is that the mechanism that they use to steer the catheter could tear the artery wall, leading to a haemorrhagic stroke. I think my doc gave me similar odds to you. He’s a master in his field and it was absolutely fine: no damage done to me at all.
After you’ve had the embo, your head feels a bit crap (heavy drinking session) and your mouth tastes quite yuk because you breathe out the solvent from the glue for the next 12 hours. Your head has been invaded by glue and a tube so it is smarting a bit and you’ll have a decent headache but the drugs are first class. They’ll look after you in neuro ICU immediately afterwards and you’ll then move to a ward for perhaps a day, maybe two.
All in all, I’m a complete wuss and I got through it just fine. So I’m confident it is something you can do. If I needed to go through it again, I’d do it tomorrow. It was that gettable-throughable. Honest.
There are always risks with surgery and the anaesthetic but (like crossing the road to get somewhere you want) these are risks you need to be comfortable with. When crossing the road, you mitigate the risks by looking both ways all the way across. When doing neurosurgery, you need to understand whether the risk of doing the op is outweighed by the risks associated leaving it alone – and getting yourself a team you trust.
Other than that, nobody expects you to be ok with this sort of thing, so they just lead you through the day and look after you at each stage.
Hope some of this helps. Very best wishes,
Richard
Richard,
This helped me so much— THANK YOU! It’s been a very stressful time thinking of everything that could go wrong, but this gave me a lot of insight! I’m hoping for everything to go well and that I’ll make it through with minimal to no complications! I’m glad yours went well for you, and pray for continued healing to come your way! I never thought to look at it in the perspective of crossing a road, and I think that that is a really great way of looking at it! Thanks so so much!
-Bella
I sent you a direct message it’s a lot of questions and I’ll be happy to answer
Basically the worst risk is death during the procedure so after 6 people died around 8-9 years ago the new Onyx has a mechanism which when you pull the catheter will separate and detach. Medicine keeps evolving and so has onyx. You ecan is m to be low risk though as you have not had a hemorrhage yet. If you do GK there is a very big change GK can cause hemorrhage, you haven’t told us the size of your AVM. I highly recommend embolization first then the risk of immediate bleeding (which can cause death) is reduced dramatically. There is a smaller chance of hemorrhage during a controlled procedure that with your own normal body and day to day emotions and blood pressure in this fragile area of your body. Not doing embolization is for me the absolute worst option (unless your AVM is 2-3 mm)
The way doctor explained me GK is for finishing touches or when the AVM is in the cerebellum or a part that is way way way to risky to embolize.
Your risk is vision
There is a Wada test that helps you know before embolization about the risk
Your biggest task is find a doctor that performs Wada testing
Not all doctors like to test
A lot of decisions… but don’t “wait until next year” please
@rafarataneneces]
Thanks for the info. How long doe it take you to be obliterated after the gamma Knife treatment?
I didn’t perform any GK treatment I did only 3 embolizations and it’s now obliterated
Zoe,
Gamma knife typically seems to take 2-3 years.
Some of the gamma patients can share their actual experience.
Best wishes,
Richard
@rafarataneneces
Thanks for sharing your experience. According to what I read before, embolization’s success rate is about 40%. So You’re one of the lucky 60% !
Thanks for your kind response. It’ll be great to know other gamma patients’ actual experiences. My gamma treatment was done in Feb. 2017. I had a hard time in the first half-year. Recently I often feel lightheaded after working with the computer or reading or watching TV for a while though I take outdoor walk daily for more than two years. A doctor mentioned it would take 3-4 years to obliterate my AVM, which was 0.7 cm. I’m interested in learning about any gamma knife experiences.
Hi, I had a right sided AVM which required 3 embolisations in 2015 and then Gamma Knife surgery in Nov 2016. Two years later in 2018, I had another angiogram which showed that my AVM had been obliterated but also showed that I now have a Dural Fistula on the left side of my brain (which was not there when I had my initial angiogram in 2014). Since Summer 2016, I have also experienced seizures (both simple focal seizures and status epilecticus on numerous occasions), which were initially misdiagnosed as TIA’s before I was finally diagnosed as having Epilepsy. Although I was advised of potential risks during my embolisations and Gamma Knife surgery, at no time was I advised of the potential for developing a Dural Fistula or that I would have Epilepsy after the procedures. Epilepsy has affected my life greatly as I had to give up work (actually could have worked on but was embarrassed having seizures in the office), given up alcohol, unable to drive and hesitant about going on holidays in case I have a seizure requiring emergency treatment in an foreign country. Please ask you Consultant about the risk of Epilepsy!
Hi Bellnicci,
My son underwent a GK in 2016…now he’s 21. Obliteration is about 50%. His neurosurgeon n a radiologist feels it takes a long time to have full effect… He continues with his studies…He’s on anti epileptics as he had seizures before… He’s seizure free from 2015…Good luck!!
These things are terrifying, I know. May the grace of God be with you.
Bella,
When are you in for your embo? You indicated this week some time.
Just know that it will be ok and we are all here crossing fingers and thinking about you and all that sort of thing.
If you do lose a bit of sight post op, some of it may be to do with your brain taking exception to the disruption, so don’t immediately think you’ve lost it forever. There’s as good a chance it will come back as not once everything calms down in there.
Ok? Stay positive and (personal advice; no idea if it makes any difference but) do some great hydration the day before and then quit from when they tell you you need to abstain.
Very best wishes!
Richard
Hi!
I had Gamma Knife two years ago and it worked. Two weeks ago, I had a MRI and my doctor called me that day to tell me it was safe. That it cannot be detected on the MRI anymore. I’ll have to have an angio to be completely sure, but he told me that he doesn’t expect anything to show on the angio either. So I’m one of the lucky ones. I was diagnosed after experiences loss of (coherent) speech on several occasions and was diagnosed with epilepsy. Neurologist send me for a MRI just in case and discovered the AVM in my left temporal lobe.
He send me to the academic hospital in the city I live in, and they told me they didn’t want to do anything because ‘I might have another 20 good years’. I was 24 y/o at the time. So I went to another hospital to get a second opinion. The only one that offered GN in the country. The neurosurgeon there ordered a fMRI and suggested GN instead of traditional surgery or embolization because the direct risks with traditional surgery or embolization where bigger for me then the risk of waiting for GN to work. So I took his advice and had the GN. And it worked.
I did experience hair loss in the area that was targeted by the GN, but it grew back and I thought it was a small price to pay in order to avoid a bleed. I experienced a lot of fatigue after the treatment, but by now, I have more energy then I ever had before. I work a hectic job, have a great social life and I no longer have to fear the bleed. And I might even be able to go of my epilepsy medication in a couple of months. I’ll start experimenting at some point (after talking to my neurologist of course).
So it worked out well for me. I’m really happy that I considered all the options and that I chose the one that worked for me. The waiting was difficult, but I’m okay now.
Good luck choosing the treatment that works best for you and I hope you have the same end result that I did! You can do this!