Newly diagnosed AVM. Would love some insight. Have seen 2 surgeons and both are recommending different forms of treatment

Hey everyone! Basically I’ve never had any health issues, I’m a very fit and active guy. I started to having these sort of twitch’s in my face which I thought were maybe from dehydration. I just wrote them off as maybe like cramps or muscle spasms. All my symptoms were on the right side of my body. The spasms would last 2-3 minutes on average.

I had a really serious spasm one day where basically the whole ride side of my face, the right side of my neck, and my right hand went completely numb. During this particular spams this muscle in my face started twitching like edge never seen and it was terrifying, I know something was wrong.

I went to urgent care and thankfully I had taken a video so I had evidence. They ordered my a CT scan and it revealed I had some brain swelling caused by some type of change in blood flow in my AVM. I had no idea I had an AVM until that point and it had never shown symptoms. I found out my spasms were actually partial seizures.

They said it hadn’t ruptured but was swollen. They did an MRI and an angiogram. I was discharged after 2 days. Since then I’ve seen a surgeon who works for Kaiser and a surgeon who works for UCLA. I have an appointment with a radiation oncologist next week.

All this happened within the last 2 weeks so I’m just just processing everything. Both the surgeons gave me different advice. 1 suggest to have the surgery to remove it and the other sais radiation. Hoping to get some advice and perspective from the community. I’m just kinda scared right and don’t really know what to do.


Hey, welcome to avmsurvivors! It’s great to have you with us, though it is always disappointing as to why we get together!

My own general view of treatment modes is that each is as valid as the next. There are circumstances when one is better than the other but sometimes the recommendation you’ll get from a practitioner will be to do with their own skills and preference.

I’d say historically, embolisation as a treatment mode has often been as a precursor to surgery rather than a sole treatment in itself. However, it is more commonly being used alone. My only treatment to date has been one embolisation (5 years ago now).

So, the best thing to do to help choose is to ask each doctor why it is that they prefer surgery or embolisation.

Often/historically surgery is seen as the most permanent solution. The thing you had? It’s gone. Physically removed (or clipped shut). However, if the AVM is deeply set into your brain, there’s an increased risk of collateral damage to get to it and operate.

With an embolisation, the AVM stays in situ but is filled with glue or coils etc to block up the lesion. This blocking takes it out of commission in a similar way to clipping it shut. Embolization is done by inserting a catheter (a fine tube) in at your groin or wrist and guided up to the AVM and the glue, coils etc injected at the right point. I had a 6mm incision in my groin for my brain surgery: I think that’s just amazing. Consequently, there’s less damage to adjacent brain by using embolisation.

For other circumstances, there is also a treatment mode of zapping the AVM with radiation. However, it seems that yours does not warrant this approach.

What you’re going through is a decent dose of shock. I hope that by helping you to understand, we can take away a lot of that shock. So, please feel free to ask anything you like.

Hope this helps,



Thank you so much for your insight. Where my head at as of now is kinda leaning towards embolization or radiation. I guess to me the thought of the risk of potential complications aren’t worth the risk but also I’m just really confused and scared.

My AVM is a grade 2 and is located in the part of my brain that controls the movement/sensation on my right side.

My thinking is if I do radiation of embolization I can still always have surgery, where as once I do the surgery there’s no going back so why not exhaust all the non surgical options I can.

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Hi @Blade
welcome to the community, and please know that we are plenty all over the world, we have gone through the same questions and anxiety as you probably are going through.

It sure seems that you have caught before any serious complications, that is good news. As Richard mentioned, there are several ways of taking care of an AVM, and most times it has to do with location of the AVM, grade, Dr specialty and maybe even where you live (country).

I myself had a grade 2 AVM, posterior / cerebellum. It was “superficial”, so surgery was an option. Gamma Knife was also an option, and as Richard mentioned when all risks have been analyzed and well thought, if you have a successful surgery, it cures it.

I had surgery in Cleveland Clinic Ohio, June 7th of this year. Thankfully everything went according to plan, and yes recovery is tough, but I feel 2 months later around 90% as before and getting there. A lot of physical therapy. I went with surgery after many considerations and also after finding 3 small aneurysms in my AVM when performing de angiogram. I did not go with GK because of the waiting time in my case.

I hope it helps and let us know if you have specific questions.



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Welcome, great you found us and I hope we can help. We have a great range of experiences here, and while all are different we share a lot in common. You are early yet, and I can tell you I was scared when I found out about my AVM. This group helped me a lot, scared is normal, understanding that actually helped me so much. Fear is normal, courage is carrying on despite the fear. I had gamma knife back in 2016 for a grade II, and it is now obliterated. So any questions feel free to ask. Take Care, John.


Hi there! Thought I would chime in with my nonmedical experience to see if it helps. I found out I had an AVM by a massive bleed in 2000. Had to relearn how to walk, talk, read, and write. Finished college, started working full-time, finished college, and was told to go live my life. Fast forward 10 years to 2010 when another bleed happened. Drs didn’t see that coming either. Lost part of vision from that. Went back to working full time. Kept driving. Then in 2018 I had another out of the blue stroke that took out my right visual field. I was 38 when that happened. All this to say, YOU are your best advocate. I wrote my story in “Malformation: when bad things happen to the right kind of people”. Blessings as you continue grace and peace as you go.

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Hey! Were there any side effects? Why did you choose radiation over surgery?

Thank you for responding! What was your treatment route after your first bleed?

After first bleed, it was physical rehab and gamma knife. I was in a medically induced coma for a bit as well. I had a shunt installed as well. I won’t bore you but I’ve gone under the knife a lot of times but needless to say, I had to stay ahead of the bleeds because watch and wait was horrible advice for me.

The main “drawbacks” to radiosurgery are that you’ll irradiate an area that is larger than the AVM and it takes a longer time to act. The focusing of the radio beams is such as to minimise collateral damage that but I’m sure it has a wider effect. Obviously, if your AVM is relatively near the surface, then a smaller area may be affected. If it is deeper, the radio waves have to penetrate other tissue to get to the target zone. You can get issues with oedema (brain swelling) which causes intracranial hypertension and can require management.

None of the treatment modes are without risk or complication. So, rather than focus on which mode you feel you can cope with best, make sure to take the doctors’ advice on which is most suited to your situation. If neither doc has recommended it, it may be less suitable for you.

Radiotherapy is often used for those areas where open surgery would wreak too much physical damage to surrounding tissue, and/or where the risk of a bleed while it takes effect is low. It is also used where the vessels are too small to approach with a catheter. It may be used for other reasons but these seem common.

I hope this helps.


I didn’t have any lasting side effects. I had some swelling about 6 months after the radiation, and what we refer to as ice pick headaches but they disappeared. There has an area around the AVM, which had been referred to as a void or artifact, that was as a result of the bleed that allowed them to be “generous” with the radiation.

I had two options for treatment, GK or craniotomy. I made my decision based on discussions with my neurosurgeon. My AVM was on the inner side of the left temporal which presented some access challenges. When I asked my Dr. what he would do if it was him, he said he would go with gamma knife, made my decision easier. Far less chance of side effects in my case.

The waiting was difficult, particularly off the start but I got used to it fairly quickly and was able to take the whatever will be outlook. We did have the understanding had I had a second bleed during the lag period that surgery would be the result. I always say it ended up being the right decision for me, but it took over two years to know that. The important thing for me was to be at peace with the decision I made, which I was.

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Hi- welcome. You will find a lot of experienced and supportive people here. I had a bleed in Feb of 2020 followed by gamma knife in aug 2020. I have my first post angio gram in a couple of weeks to check on results this far. Surgery was not recommended for me because of the location of my AVM (too close to my motor function). I did have one doctor recommended Gamma Knife and one recommend Cyber Knife. The difference you ask? I was wondering the same and got a 3rd opinion. I learned that one hosptial had access to Gamma Knife machine and the second had Cyber Knife machine. Third and final was Gamma opinion. I was advised Gamma was more precise and better suited for my AVM.

If you aren’t sure seek out another expert opinion. Ask why they are recommending the course they are recommending. Ask why they wouldn’t do the course someone else is recommending. As someone here mentioned sometimes the surgeons recommend what they have access to in their hosptial. That happened in my case.

Good luck to you. I wish you all the best and a successful outcome.


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I suppose, I’m chiming in a bit late

Well - I am a huge spokesperson for Barrow Neurological, considering they saved my life with a 100% obliteration on the 1st embolization after I hemorrhaged just a tad over two years ago.

Each surgeon comes in with a different approach. At BNI, they seemed to really work as a team to form the best solution.

I know it’s out of state - but, that’s my input

It’s difficult for me to say, but I am glad it wasn’t my decision. I/they had no choice - my dAVF location is close to inoperable & they needed to relieve the pressure immediately.

Wish you the best!

Hi Blade,

Firstly welcome to the family! Sorry to hear about your recent AVM diagnosis but rest assured you are not alone & will overcome this…

It’s definitely not ideal when you have two different opinions but maybe you need to weigh up the pros/cons of each one to determine what is best or possibly seek a third opinion.

I’ve always thought surgery is the best option if it is possible with minimal risk as the AVM can be removed completely much quicker vs radiation which takes more time & may not remove the AVM completely, however I’m not a medical expert.

I would mention to each doctor that you had a different opinion and see what their thoughts on it were… it may provide some clarity as there may be a reason why 1 is opting surgery & the other is opting radiation.

I’m sure many others here can assist with their general experience and please keep us posted and updated…it’s not an easy process and it’s normal to be scared and worried, we all were and some still are BUT if we can offer some guidance or reassurance here it will help you more than anything… God bless!