I’ve posted before about my 15 yo daughter having had a bleed this February and 2 embolisations, one at the time of the bleed and another one 3 months later. It was during this last embolisation that it was decided not to touch the remaining avm and treat the surprise aneurysm. What remains of the avm now is a candidate for a craniotomy. We have been told the two remaining branches are too close to the brain and the right side drainage system and therefore not a candidate for further embolisation. In 3 months time an aneurysm formed on a previously embolised part of avm so they (neuroradiologist and neurosurgeon) feel it is riskier to go for gamma knife given the long scarring process. The reason a craniotomy is now a possibility is because of the cavity the bleed left behind, this would be a way to get to the avm without too much risk. What is too much risk? The risk vs another bleed. Naturally we are nervous, we are in France where embolisation is the much preferred method. My daughter is also very stressed about having ‘her skull opened’. She was lucky after the first bleed in that she regained 95% of motor deficits and is now under intense treatment for speech and language. I am hoping to reduce our worries by reading craniotomy success stories. I feel we are in good hands so I have no reason not to trust our doctor’s opinion.
Hi @Bibi
We have lots of craniotomy success stories and you’ve posted in the right place, so I hope a bunch of mums and dads will tell you their son or daughter’s story.
The risks that have reduced will be the risk of doing more damage than good by performing a craniotomy: it is always the risk of doing damage by intervening v the risk of having a haemorrhage from leaving things alone that the doctors are balancing and giving their opinions on.
I’ll try to find a couple of example stories for you. There are plenty. Obviously things do go amiss. Sometimes the risks the doctors have been talking about come to fruition because this is the nature of the process. The objective of the craniotomy will be to aim to resolve her bleed risk quicker than through gamma knife or cyber knife which might take a couple of years to take effect.
Let me find you at least a couple of stories.
Lots of love,
Richard
Here’s one
And an article about it:
And here’s another
Hi there and in reading your post I must say it’s a terrible spot you guys are in. I’ll share my story only to drive home my point, you need to do what you feel is best in your situation. I’m a survivor of 3 bleeds, a host of other surgeries, craniotomy, two gamma knife treatments, an appendectomy, and shunt install, a shunt revision, and I’m sure others I missed. The point, I don’t think there’s a right or wrong to treat per say but a risk. There were risks going without getting mine treated and they each bled leaving me with a constant fear in the back of my mind that the doctors missed one, which they did 4 times. Alternatively if I had gone without treatment I would probably be dead from the bleeds in 2000, 2010, and strokes in 2018 and most recently in 2025. So to bring it back around to where I started, the best thing you can do is to live life to the fullest rather than worrying too much about what could happen and instead focus on what is. I wrote a book a published it a few years ago available on Amazon → “Malformation: when bad things happen to the right kind of people” in realization that there would be others who came after faced with similar struggles and I just wanted to be a light in a dark place. Blessings as you continue, grace & peace as you go!
I wanted to let you know that I had brain bleeds as a teenager and after a pretty bad seizure was discovered to have an AVM. Had the surgery when I was 19 and was on anti seizure meds for a year.
I still have scars in my head, but am alive at 57 and am married with 2 grown daughters. I have lived a pretty normal life after the surgery and am greatful to the doctors who helped make that happen.
I really love this answer. There’s no right or wrong answer. There’s no way to know the future. So we pray, and we choose what we are at peace with. No one is the same as another, and no AVM is identical to another. For me - my husband never knew he had an AVM until a severe bleed which gave him little chance to live through the night. When he did, he had a 10% chance of any functionality. It’s 11 years later. He is disabled as it was a very severe bleed, but is healthy and with us. He enjoys his grandchildren who love being able to climb up with him and watch little bear or Andy Griffith - they enjoy all their grandpa’s medical equipment - they ask him if they can play doctor with him and he’s the patient. We’ve made the best of the worst and love life. God’s been good through it all. I don’t think all the options were available back then, and had they known he had it in the first place, perhaps we’d have done something, or perhaps we’d have stressed over the risks one way or another and chosen not to do anything and ended up where we are now! But we didn’t have the opportunity to do that. It just hit us. There was a verse in the Bible that helped me when I had to make decisions after the fact, “Who knoweth whether shall profit - this or that”. I took it as let me try anything that has a potential for helping…and that’s what we’ve done. Anyway - stressing doesn’t help, you can only do the best you can do - and then once you have - don’t look at any “what if’s”. I went through some what if’s but then to go forward, I had to just realize that IF we did anything differently, we also don’t know the what if of what the result had been. So pray, talk with your dr that you seem to feel confident with, and enjoy life in the meantime.
By the way - for anyone reading who’s in the Southern CA area - I know of an AWESOME brain rehab over here for adults.
One more note for those left with disabilities - don’t quit trying to get better. Amazingly - things really do get better that drs thought never would.
I especially like this.
I am sure it is particularly hard to be in a position of having to accept that further treatment is too dangerous to proceed.
I had a bleed in Dec and a craniotomy on 6 June. In my fourth week of recovery. In my case embolisation was not a good option given the proximity to motor cortex. I chose survey over gamma because I was optimising Ng for obliteration and not concerned about the scarring or recovery. Gamma Knife played on my mind a lot because of the long wait time (3-5 years) and mentally I couldn’t live like that. I was severely depressed for 6 months and scared of another bleed. I’m based in the UK and happy to chat to you if you’d like. I have also put a website and blog together which I find cathartic to my situation so please have a read if you find it useful mattgillet.com
Hey @Bibi ,
My name is Merl I’m a member of the modsupport team here on Ben’s Friends. I purposely hadn’t responded as my outcome has been less than positive post craniotomies.
BUT,
In reading @randombeggar post, I couldn’t agree more. There really is no right or wrong answer. The decision needs to be made on the basis of for you and your family.
I now ‘try’ to look at it this way: Could things be better? YES!!! But then could things be worse? And again, the answer is ‘yes’. Had I not had the craniotomies, I’d be dead. None of us are in this position by choice. Nobody would want a craniotomy if it wasn’t necessary. With some members we sometimes suggest a 2nd opinion but in your case it sounds like all other options have been examined. Similarly to @randombeggar , I’ve required a few neurosurgeries and have sought 2nd opinions, with the reality being that I ended up back in exactly the same place I started, but it did put my mind (somewhat) at rest that I truly had no other option.
This neurosurgery journey is not easy and anybody who tells you otherwise has never been in this position themselves. We know this because we’ve lived it too, so please, come talk to us. We don’t have all of the answers, but we do have a ‘Lived experience’ of this journey.
Hope it helps
Merl from the Modsupport Team
Greetings. I had my successful Craniotomy in January of this year at Kaiser Permanente Redwood City Neurosurgery Department. It was a successful surgery. The worst part was having the sutures removed two months later. I also had a bangin’ headache and I took 1g of ibuprofen daily for about two weeks. There isn’t much to worry about, unless you let your mind race. Neurosurgeons are the best of the best
Thanks for all the feedback. I’ve stopped reading about craniotomies for the time being until we get a date for surgery.
Hello Bibi,
I had a successful craniotomy in 2013. It was not a choice and I did not know the brain avm was even there. Was living my life and doing my thing, when it bled. The Neurosurgeon did an emergency craniotomy and then a shunt insert to help with drainage. I am grateful it was chosen, done and removed.
Yes, I did do a coma for a while, as others took care of me. Then 3 months later, I opened my eyes, followed a gently voice to sit up, and have been carrying on since.
Yes, I did have to relearn things like walking, talking, eating, bathing, taking care of myself, but I did. And in my own sweet time. During that time, some other memories and abilities came back as well.
Yes, patience and time are good friends. When I first joined this site, advice I received was to remember that healing with an Avm, takes time in years, not days.
Some of my former abilities did not return, but then others were surprisingly gained. I thought that was a good deal for me. Discovering what is now what, became interesting.
Yes there were times of frustration, depression and sadness, but they were minimalized by the mementos of wows and awes. Not meaning to sound preachy, but my relation and faith in God, tremendously padded many times for me.
That ‘peace beyond all human understanding’ was something else and took me through scary (to me) moments. Now looking back, they were scary because they were uncertain.
In the 12 years since, I’m happily chugging along. Maybe at a slower pace, but it’s all mine.
I watched shows or music videos I liked or made me laugh, or happy. Keeping things up beat, helped a lot. I also sang. Did not care that I should not, but I did and it felt good.
Hope this helps and best to you and your family.
My 18; year daughter experienced an AVM rupture in the thalamic region, and subsequently underwent a craniotomy to drain the leaked blood, which was later cleared by cerebrospinal fluid. Three months later, she was treated with a precision Gamma Knife procedure. While we were initially apprehensive, the procedure was swift—completed in just four hours—and since then, she has remained completely free of migraines for the last 6 years and is studying to be a neurologist herself.
I sincerely encourage you to consider the Gamma Knife as a viable treatment option.
Thank you for your story. I’m glad your daughter is doing well now.
My daughter’s AVM is not a candidate for GK because of the risk of bleeding in the near future. I am not prepared to take that risk given we’ve already spent a brutal month in intensive care after the initial rupture. Possibly after the craniotomy GK needs to follow up what remains but it can’t be the only treatment.
I loved reading your story it made me feel so good. About 23 years ago I had an AVM rupture and bleed. I was flown unconscious to Loma Linda Hospital. After about 4 days the doctors said they could do surgery and then I was placed in a medical induced coma for 6 weeks. When I woke
up I didn’t know where I was and I didn’t know I had brain surgery. It
took me a while but with God’s help I learned how to walk again and
understand all that had happened. Now I can do almost everything I
want to do (I do have a little problem remembering names) I do have a
good life and am very grateful for these years of recovery.
Mary
We now have a date for our daughter ‘s craniotomy. What are your tips that have helped recovery? Especially after leaving hospital while recovering at home.
My favourite tips are:
- Pay attention to good hydration before she goes in: you always get a bit dehydrated through operations, so make sure to do nicely in the run up.
- Trust the team. They don’t expect you to be in any way comfortable about any of this, nobody is. Just let them guide you and her through the day and through the week. They look after everyone, they’ll look after you.
- Don’t panic if something appears to be wrong post op. A craniotomy is a major assault and things swell up when injured, so some effects post op will just be to do with that swelling which will subside.
For example, we’ve had some people unable to speak post op or see post op: these are naturally very frightening things: but they have recovered, sometimes very quickly. Just encourage her that there’s every reason to believe that any effect post op can be temporary, not to think that life has taken one of the worst possible turns. There’s no reason to worry that much if she gets something unwelcome post op.
I am convinced I worried most about my op because of the unknown, because I’d never had to go through an embolization before, and there are some scary risks. Try to trust the team that they do this every week and will bring her through the whole thing well.
Lots of love,
Richard
Hi Bibi. My 11 year old son had a craniotomy to remove his AVM in late March. I was surprised at how quick the recovery was. It was much easier and quicker compared to the recovery from the AVM rupture in January. There wasn’t a lot to do to support his recovery other than continuing Advil and Tylenol for any pain. He went back to school after about a week or so and the first week back to school, we did half days just to ease back into it. We also drove him to school and picked him up (which we had been doing previously anyway) to avoid any falling injuries on the bus/bus steps or with the large crowd of kids. We also kept his wheelchair at school just in case he got fatigued easily (due to either his surgery or his left hemiparesis). Just wanted to share our experience in case it provides any comfort to you and your family. Best wishes for a successful surgery and recovery 
My thoughts are with you and your family during this difficult time.
Thanks for sharing your positive story. I’m glad to hear your son is doing well.
We were surprised when the surgeon said she can start school after 2 weeks. It seems so quick. She had a rupture in February and the recovery from that is still ongoing.