Is craniotomy success really success?

Hi everyone, I’m Matt. I’m 28 years old and have been diagnosed with an unruptured 3cm grade 1 AVM in my right frontal lobe. I’m scheduled for a craniotomy in the coming weeks.

I’ve read studies that indicate 90-95% of grade I/II AVM craniotomies are deemed successful as they fully remove the AVM and leave the patient with a rankin score 0-2.

At face value 90-95% sounds fairly good, but the definition of success is worrisome to me. I see anecdotes of people here with persistent headaches, seizures, rage, scar tissue, or trouble processing following a craniotomy. These post surgical symptoms would mostly fall under 1/2 rankin score. Meaning the surgery would be classified as a success, even though the patient’s quality of life has declined, in some cases substantially as a result.

I want to better understand the likelihood that my life will be permanently changed by these more minor symptoms following craniotomy. Does anyone know any stats on the likelihood of permanently going from a 0 rankin score to a 1/2 following craniotomy?

Thanks for any input everyone. I feel lucky to have discovered this forum :slight_smile:


Hi @mattb

Welcome to the community and of course, so much information to digest that it can be overwhelming.

I am not sure about the statistics you mentioned, going from a 0 small o 1/2, first time thinking about it actually.

What I can tell you about is my experience. I also had an unruptured AVM, 3 cm grade 2-3. And I had a craniotomy 1 year ago. I was advised @ Cleveland Clinic Ohio, Dr Mark Bain, that I could have had GK (wait 3-5 years) or surgery. Knowing the risks, we chose craniotomy. The recovery of course was not easy, but not impossible as well. About 8 weeks yo fully feel like my self again.

Now, am I like my old self? That is a question I have asked my self many many times. To be honest I don’t completely know. I feel fine, I can exercise regularly, I have no physical limitations, no pain, but sometimes I feel unbalanced. My AVM was located in my cerebellum middle to right. So that might be it. And I try not to think to much about it, and when I do, I try and remember to be grateful that I had options, I am here and present.

I don’t know if I helped you out, I don’t have stats, but I can definitely relate. I hope you do great and let me
Know if I can be of any help.




Hey Matt,

And that is completely understandable.
I think it depends on who is making the definition and what measure they use to define ‘success’. For example, I had a craniotomy and post surgery I was told ‘All Fixed’, I queried this as the flow on effects were nasty. ‘No, no. We operated. We fixed…’ and it was true, they had operated and had dealt with an issue. But in doing so they had unleashed a plethora of side effects, but the surgery itself was deemed a success. As you state anything under a Rankin of 2 is still considered a success, but the range between 2 and 3 can be HUGE, so even at 2.9 it’s still considered a success?

Approximately, 3mths post craniotomy I was back on the operating table requiring further neurosurgery because it wasn’t ‘All fixed’ at all, they had merely used their own measure to quantify their success and had not taken my reported symptoms into consideration in that measure. The response I received when querying this was ‘Well, the scans look good…’ and sure, they did, but the physical side of things was far from good. I could still walk/talk, so all was fine (according to them).

There are a few differing measures used from Rankin to the Glasgow scale to the ‘modified’ Rankin (of which it seems there are 3-4 versions) BUT, and that is a BIG BUT, they are all very subjective and depending on who is actually making the assessment, the interpretation can vary significantly. Some measures concentrate on mobility issues as an indicator, but mobility is but one function. Initially, post surgery, my mobility was an issue and over time this has improved significantly. But some of my other symptoms have not improved and the headaches have become a constant, it’s the intensity that varies. Can I function? Yes. Can I walk? Yes. Are the headaches debilitating? YES. But that doesn’t show on the scales.

These scales do have a use and they can be of benefit to the dr’s. But basing your recovery on such a scale does not take everything you may need to manage, in your recovery, into consideration.

Now, I also want to say here, I am yet to hear of two neuro patients, going through all of this, having the exact same outcome. Some people can come out the other side relatively unaffected, some can have lingering symptoms and some can have life altering outcomes. It seems the deeper within the brain, the greater the impacts and the more difficult the recovery, but there can be many variables to that including exact location, surrounding structures, ease of access etc, all of which can have an impact.

My advice for your recovery:
Take it slowly, slowly. Do Not go pushing your limits. This is a time to be kind to yourself. The slower you take your recovery the better your outcome.
Listen to your body. When your body says “STOP”, you stop. Your body will give you signs, but you need to recognise those signs.
Medicate. If you need them, then use them. Some of us males take what I call the caveman mentality. ie ‘I man. I strong. I can beat this…’ and don’t use the medications. You are only disadvantaging yourself.

I say all of this because I did the exact opposite. I pushed my limits to recover quicker, convinced myself I was building stamina. My body was screaming at me to stop. I didn’t listen. Something went ‘POP’ and I ended up back on the operating table. Ahhh, don’t be doing that.

I must also agree with @JFrancisco in regard to statistics, I’m not sure. Personally, I don’t hold much faith in statistics. If you survey the right group of people statistics can say anything you want.

This ain’t an easy journey, we know that because we’ve been there too. Just roll with the punches.
I wish you the very best of luck in your surgery and recovery and please remember, we are here if/when you need.

Merl from the Modsupport Team.


There isn’t an exact answer - and, welcome to the board

Thankfully mine was emobolized & considered cured on the first try. Unfortunately, it ruptured & changed my life. Apparently it was one of a set of ruptures that I didn’t even know happened.

Do I feel normal now? No - everything has changed. Not all negative by any means - but, everything is different. No one really knew the extent of the damage the last stroke caused.

In all reality - I feel ok. . , but, it’s a new ok. I have random sensations of odd symptoms - i.e. my right leg goes numb, right side of my head feels off, pressure behind my right eye, throbbing in the region the final hemorrhage happened & so on

But, I do feel fortunate - I follow many stroke survivor stories & mine is nothing in comparison

There’s no right or wrong - wish you well, and us all


Hello Matt,
My background is Science, Maths and Research and I was diagnosed with four dural fistulae in 2021. I agreed to a craniotomy because I felt that the quoted statistic of a risk of a 10% bleed every year was more than something that I felt comfortable managing with adapting/improving my own lifestyle, and additionally, I had four dural fistulae which I felt would most likely re-adjust the statistics. I did not want my legacy to involve seriously injuring another person if I should have a bleed whilst driving for example.

My craniotomy decision is not something that I regret. What happened afterwards with my recovery is something very separate, still ongoing, and exceptionally brutal to deal with BUT it is more to do with me discovering what has gone on behind the scenes with my neurosurgical care. The incredibly kind people on this forum have helped me beyond description with this.
I think I would say that it is as important to take time to follow Ben’s Friends Advice and really be confident that your neurosurgical team are TRULY working as a team. I thought mine were but they were not. When I started to gain courage to ask questions, the response of my neurosurgeon was quite simply ‘…that was nothing to do with me…’ I am still open mouthed at this. I agree that ‘success’ depends upon who is talking about it. According to my hospital I have been treated entirely successfully. (Err, ask the paramedics who have come out to me twice now in the early hours, in appalling distress?!)

My dural fistulae did return and so the decisions regarding care and treatment are going to return in parallel. I have fought like a…wildcat? move my care to another neurosurgeon and team in London. I feel sick with terror about…everything. But what I do know now, is that the problem with my old neurosurgeon, is that he did not believe he did anything wrong. It is this attitude which has seriously damaged me as by default, it must all be my fault! Whilst I am changed, I now have more courage to look my neurosurgeon in the eye and ask him to discuss his mistakes, or perhaps more subtly, what his approach is, when things do not turn out in the way that he had anticipated. Interestingly, I have read research papers about how the current imaging methodology may struggle to detect ‘hidden compartments’ within fistulae, that the surgeon can’t see.

I hope so much that this helps and that I haven’t said the wrong thing. I gained a great deal of comfort in plunging myself into learning about the brain and neuroplasticity.

Best wishes from Talloak


Hi Matt! Welcome to the group I bet you never planned on being a part of! I’m sorry you’re dealing with an AVM but I’m also very glad you found this group before they found you dead! As a member who had a bleed in 2000, another bleed in 2000, a craniotomy in 2010, another bleed or a stroke in 2018, and something that recently happened that I’m still processing with my left leg going off kilter, it’s never a dull moment! Let me first say, if you have something new that happens that you can’t explain, better to be at the doc office or ER and it be nothing than at home and dead. I was advised this by a neurosurgeon. Second, if you go to the er they can run scans to see what actually caused the pain or issues. Telling someone over the phone does little to help. Third and finally, I understand at least in part what you’re going through. As a survivor of three AVM bleeds, a stroke, a craniotomy, an appendectomy, gall bladder removal, paralysis, etc, I get it. But for the sake of your family and friends, and for the sake of those who will come after you, get yourself to the hospital where they can record and hopefully repair the damage for yourself and those who come after. Check out a book I wrote before I went partially blind “Malformation: when bad things happen to the right kind of people”. Grace & peace as you continue, blessings as you go!


Hi Matt, Welcome. You got some, literally, priceless advice here. The great news is that your AVM didn’t rupture (mine did). So time is on your side and that gives you options that can lower the various unavoidable risks. Unfortunately, I’ve learned here that human error is always a risk, even among neurosurgeons. Whether they refuse to admit it for liability reasons or pure ego-- who knows? Best wishes, Greg


I have no regrets getting mine treated, I do still wonder if I chose the right form of treatment (I chose coiling and craniotomy). The probabilities of a bleed would have the biggest impact on my quality of life and my AVM started to cause symptoms for me anyways.

My surgery did come with extreme challenges and I required emergency surgery after the first craniotomy which was horrible. I now have a dent in my head. I also have to take anti-seizure meds due to the surgery and I may have frequent symptoms - but I also have a chronic illness that may cause the symptoms.

Despite all of this, if there were no alternatives (gamma knife), I still don’t regret getting the craniotomy.



Welcome to AVM survivors! It’s great you found us, though none of us envy being here!

What to add to what everyone else has said out loud?

I think it’s fair to worry about being “different” post op. I’m sure it is a risk (and in particular with the frontal lobe). As someone has said, I believe also that it may well depend on how large, complex, deep the AVM is and what will be disturbed through surgery of any kind. We do have info in the AVM 101 category about classifications of AVM. I can’t remember if 3cm counts as “large” but it doesn’t sound especially small to me, so again, it feels like an above-average risk.¹

However, maybe the way to think about this is that actually, life has changed with this discovery. The road ahead isn’t the seemingly nice, straight open road with what looks like great visibility of what is coming. Rather, the mirage has gone away and the unusual and unwelcome twists have been revealed, with a big fork in the road.

So, you’re not choosing to “stay the same” by not having an operation or to “take a risk” by having the op. Both routes ahead look less straight, in fact it’s difficult to see where either of them lead. Both have risks, they’re just rather different risks.

You say in your profile that you’re scheduled for a craniotomy. When is that? You’re obviously not quite comfortable with it (none of us are). Have you done enough asking of questions of your neurosurgeon about how they view the risks that you mention? I don’t know how second opinions work in Canada but a lot of people take multiple opinions into consideration before electing for an operation.

It is possible to obtain remote second opinions from the major US neurosurgery practices without travelling and without spending more than a few hundred dollars, if that is something that would help you to be more comfortable with going ahead.

Ask anything you want. This is what we are here for.

Best wishes,


¹ OK, so on looking, the grading system has 3cm as “small”, but borderline medium.

Hey Mattb. A 3 cm unruptured avm. Have you looked into the probability that your 3 cm AVM will bleed, per year? I was told that my Frontal Lobe AVM had a 3-5% likelihood, per year, of bleeding again. And that was after it had already bled… I was sitting with my wife, and the vascular neurosurgeon, about 6 days after it bled, discussing my treatment options. I chose to have the craniotomy, because at 59 I figured I might (optimistically) have 30-40 more years, and I had two teenaged boys, and a lot to live for. So, we planned to schedule the surgery as soon as we could…
The very next day I found myself face up in the garden with cartoon birds flitting around my head (a la Deadpool). So, that surgery was put on a “more urgent” timeline.
Anyway, what I am getting at is that even with the deficits that are possible (and your list pretty much nailed them) I would rather be here to deal with them, than not be here at all.
My life has been “permanently changed” by both the AVM and the Craniotomy, but these changes can be viewed from both sides, positive and negative.
I experienced all the effects on your list: but that doesn’t paint a complete picture. The persistent headaches, well, I learned to hydrate much better than before (never be without a water bottle). Drink more water, less alcohol… The headaches are not much worse than they were before, just from different causes…?
Seizures… yep, I had just one. 14 months after the craniotomy. It really took my by surprise, while standing in line at the grocery store. Luckily, I happened to be right behind a good friend, who lowered me to the ground. Woke up in the hospital, lost my driver’s licence for 6 months, was put on Keppra for the rest of my life. I have never had another seizure, but still considered to have a "Seizure disorder).
The Keppra caused K-Rage. But, a few dosage modifications, and getting rid of one teenaged headache, and it is negligible and I am even-keeled.
Scar tissue: well, I don’t mind the faint incision line around my head, but the 3 burr holes kind of stand out… I wear hats… lots of hats. But, I wore them before. I always liked hats…
Finally, trouble processing, converting working memory to short-term, to long-term memory, is probably my main deficit. But, even that can be ameliorated. A few tricks can minimize the distractions, and I have learned that when I find that I have taken a pound of meat from the freezer, but can’t find it, I see the humour in it, and know that soon enough the smell alone will lead me to it.
The long and the short: at 59 the decision was clear to me. Only you can make that decision. But any of the deficits in your very accurate list can be dealt and minimized, if you are alive to do the dealing.
But if I was 28 again, I would take Kurt Vonnegut’s advice-- stay in the shade, and Moisturize, moisturize, moisturize…
Good luck, and don’t sweat the small stuff.
Barry (Ebb)


Thank you all for so many kind replies and such great advice. It’s reassuring to read each of your experiences, although I’m still bracing myself for what’s to come. I’ll be going under in late July, so hopefully I’ll be able to post an update in the weeks following with how things go.

I’ve spoken with my surgeon and he’s hopeful that I can escape with minimal side effects if all goes well :crossed_fingers:

Wishing you all the best too :slight_smile:


Hey Matt. Welcome to the gang!
Although rare, side effects do happen. I endured a small stroke in my brain tonsil during a craniotomy, and as a result have very shakey hands and feet. I suggest talking to your doctor to help weigh the pros and cons. Sometimes the side effects may seem heavy, however are much better than the alternative.
In my experience, it’s best to do what makes you feel more comfortable with, and remember, questions are your friend!
Good luck

This is the person who knows what they can see, how difficult or straightforward it should be.

Let us know when you go in and come out and if there’s anything about hospital, etc that you want to know, have a read round or ask.

Best wishes,


Hi @mattb

I didn’t have a craniotomy by choice. Do you really want to risk having a bleed? I had hospital treatment for over a year, due to the bleed and subsequent surgery.
Sure get extra opinions but a neurologist is going to give you the options and hopefully make a recommendation for you.

Good luck

Hi Matt,

My Name is Kristian. I found out about my AVM 5yrs ago and it was a bit bigger than a silver dollar, had wisps and was 2-2/1” deep on my left side of the brain. However, it was so big it touched most every area. We had to go with craniotomy. I was given 20% change to live and 14% chance of not being a vegetable-God and I had different plans!
As for the aftermath, I would like to share my story with you. Everyone’s is different and there are always a million different risks but you have to fight and have a reason to fight! In my case if it could go wrong it basically did!
First surgery went great but a month later my scare absences in two places and I had to have emergency surgery then three months later a third in order to put in a prosthetic plate to replace the skull plate.
In a quick list, here’s where I stand today: I am deaf I. My left ear and have 40% hearing in the right, whole body weakness and was using a wheelchair or crutches/sticks to get around but thanks to physical therapy I no longer do! I take seizure meds. I have sever depression and anxiety as was predicted prior to my surgery. I also ended up having to get have a colonostomy bc my bowl muscle functions stopped properly working and a stimulator to help for the same reasons with urination. I also woke up with no long term memories and I struggle with my short term as well.
Everything is pictures, medical records, second hand from family and friends, or journals!
Was it all successful in the end? Sure, but this is still not the end…