Hello everyone. So my son had a January 16, 2024 Embolization and a scheduled AVM extraction the next day. Embolization was successful, whatever that means. Doctor said after Embolization had minimized the possibility of seizures and raptures and had cured the Aneurysms he had. Do you all agree with the effects of Embolization outcome? After the Embolization the doctor showed me a before and after CT scans where in one I could see the AVM and in the new one it disappeared. Later I found out that it’s not that the AVM had disappeared but because of decreased blood flow the AVM would stop being presented in CT scan.
The next day on the 17th he was supposed to get the AVM extracted. During the surgery, the neurosurgeon didn’t like what he saw and asked his staff to map his brain and because of it he decided not to continue as he might have made my son paralyzed on his right extremities, according to him after the surgery. I would have thought this mapping would have been demonstrated not to do surgery due to functional MRI but ok we acknowledged his reasoning. So he had to recover from the craniotomy that took him a month today. His after surgery symptoms included spontaneous right side numbness and slurred speech that doctors attributed to possible seizures or surgery. The now recommendations are possible one to two sessions of Gamma Knife. Anyone want to share positive and negative aspects of the Gamma Knife experience? I’ve wondered the way it works as a controlled burn of only the malformation … how is that possible not to burn good formations attached to the malformation. Any input of success stories due to Gamma Knife would be appreciated but also knowledge experience you want to share. I know it’s a waiting game before success can be achieved. Thank you everyone
I had Gamma Knife in 2016, 6 months after a bleed and learning that I had an AVM, some 27 months later an angio confirmed it was obliterated. Several years of follow up scans and now deemed to require no further scans. My GK was smooth, the “halo” was not a lot of fun but overall I didn’t find it too bad. I had some minor swelling at around 6 months post and experienced some ice pick headaches. I was a couple of minor effects from the bleed, and thought I had none from GK until January of last year when I had a seizure.
The seizure presented similar to a temporal origin, and can;t be attributed to GK scaring or bleed, or a host of other possibilities. It is the only one I have had. One reason my neuro preferred gamma to craniotomy was due to location and access issues likely generating epilepsy.
All this to say, I am happy with the results, hope to never have another seizure but do not regret the process at all. I wished to avoid another bleed, mission accomplished.
Take Care,
John
Thank you John. Do you take seizure meds due to the seizure you had ? Thank you so much for letting me know your experience with Gamma Knife.
My daughter (15) is one year post gamma knife the first out of 4 or 5 rounds.
As a result she started suffering from tonic clonic seizures, and myoclonic seizures and she’s lost most functional use of her right hand.
It has not been a fun year.
I don’t know what the future holds. She has yet to go for an angiogram so we don’t know if there has been any changes.
Thank you for your shared experience. I’m so very sorry of what’s this doing to your daughter. Oh my goodness! Can I ask why so many rounds of Gamma Knife? Was the AVM what’s considered a large one? Especially in one year so many rounds. My son is supposed to get one or two at most in one year because his is a little larger than 3cm. Thanks for sharing and my thoughts and prayers for obliteration after so much this done to her.
She’ll need multiple rounds to shrink it.
They originally thought she’d have her second round 6 months after the first but she wasn’t stable enough. Is was then pushed off another 3 months… still not. It’s now a year later and we’re waiting for them to schedule her.
It’s scary because we’re venturing into a world where quite honestly 90%+ of what we heard prior was the success stories. It was only post facto that we really started to hear about other people’s complications. It’s a big question do we continue or not. But truth be told she was becoming symptomatic prior to gk. we just weren’t expecting such a severe deterrent from the treatment.
Lots of other people have had wonderful success stories.
I do think it’s important to hear all sides though.
Hi @dageris
To try to answer your question about how gamma knife works, here is my understanding.
The radiation is delivered in a series of many single shots from different angles from outside the head. Consequently each shot penetrates a short distance into the brain and delivers a small amount of radiation.
By varying the angle at which each shot is fired, only the focus point of each shot gets multiple doses of radiation, so only that area is subject to enough radiation to have an effect.
I don’t know exactly how fine tuned these things are and if you have a particularly large AVM, it is often approached in phases. There is a risk of irradiating more than the very target area, hence often doing one phase and see how successful that is prior to doing further doses.
From reading on here, very little seems to happen immediately post op. It seems to be the case that it is after at least a few months that patients detect a change (which can often need looking at) and the full effects of closing vessels by this means often takes a couple of years.
The embolization sounds very successful if the AVM has already been starved of blood flow. I’m guessing that the gamma knife is to nullify any remaining areas: one thing that seems to occur is that if you don’t get 100% of an AVM, it can continue to expand and “recruit” other vessels, so aiming for 100% obliteration is to aim to avoid this.
Gamma knife is often used to access areas of the brain where open surgery would otherwise do too much damage to brain around the operating site, so it makes sense for the doc to resort to gamma knife to access something that needs removing without losing function. There is always risk with any of the surgical approaches for brain surgery but hopefully the gamma knife is a lower impact way to resolve your son’s stroke risk.
I hope this helps. If you have any more questions, just ask: it is what we are here for.
Best wishes,
Richard
I do take seizure meds, Keppra. I was fortunate and had little impact from the meds. A wide range of potential side effects, but for me after a few days of adjustment and some fatigue really back to my normal. John.
Hello everyone. My son Daniel had his Gamma Knife treatment yesterday 3/19/2024. It will only be one treatment since it’s 4<cm. Thank God. They used the Electra ICON so it gives me confidence that a top doctor used top equipment. Now the waiting time had began until it’s obliterated. My daughter calls this son of a bi *** because it has causes so much distress at home we can’t wait to see this gone. I’ll keep you all posted what they see on our first follow up months from now to see if it has stared to shrink. Prayers please. Thanks and take care AVM survivors …
Hi @dageris
I hope everything goes well for your son after his radiotherapy. Typically, no effects are seen after the therapy for several months. Hopefully, if there are any effects going on in 5 or 6 months time, you’ll be able to discuss them with the doctor but I believe it is unusual for any occlusion to occur over a matter of months: usually, occlusion is detected after a few years (like 1-3 years).
Do let us know how you all get on.
Very best wishes,
Richard
Thanks @DickD for your support. Totally understand the waiting time lines as long as it works and no hemorrhaging occurs while we wait. He received Embolization so I pray that this reduces bleed risks . I’ll let you all know. So far he is returning to his life which it gives me so much joy to see.
Oh, I’m sorry: for some reason I had gamma knife in my mind. The embolisation is much more immediate and if he follows a similar path to me (I had an embolisation back in 2017) then he’ll have a review at about 6-8 weeks to see that everything that was intended to be glued up was glued up and decide whether a second approach is beneficial.
From my own experience, I came away from the operation with a big headache and I was (really) uncomfortable for about three or four weeks, I think. I also had migraine aura symptoms for several weeks post op, which in my case presented as scintillating scotomas. These got less frequent over time and recurred again when I had the follow-up angiogram, so myself and another member on here ascribed those to the irritation perhaps of the contrast material used during scanning.
I can tell you that recovery for me didn’t feel like a straight line, so expect some odd sensations and a somewhat unpredictable recovery. To cut a long story short, I felt quite odd at six months, had a variable time over the following year and only after 18 months to two years got to the stage where I decided I was OK post op.
So embolisation seems pretty immediate but getting used to having all the right pressures in the right places takes quite a time to get used to.
So do encourage him that some to and fro of symptoms and a fairly long recovery back to feeling “normal” or close to “normal” is how it goes. If he gets anything that seems serious, definitely to be suspicious and get checked out, however. Very difficult to know when a symptom is OK to ignore, part of that non-linear recovery or something more sinister.
Lots of love,
Richard
So sorry Richard for the misunderstanding. He received Embolization on January 16th, failed attempt to remove AVM on the 17th. Since they couldn’t remove AVM, Gamma Knife was then performed this week March 19th. Now we wait to see if it can be obliterated in years from now. My hope is that the Embolization received minimizes the risk for hemorrhaging while radiation does its work . Thanks Richard for also providing me with your experiences.
I thought I was going mad briefly 
but I went back and re-read the posts and could see the outcome has been a bit of a combination of almost everything!
Often, doctors in the US will use embolization as a step in the process of excision of an AVM, to reduce the risk during the craniotomy. I assume that during the operation they decided that to actually excise the AVM would require them to do more damage to healthy brain than would be sensible, so decided that that was not an option for at least part of your son’s AVM. Then, the gamma knife is to remove the risk from those less accessible vessels.
So the majority of his AVM sounds like it has been dealt with via the embolization and the gamma knife is to close the rest of it down over a longer timescale.
How does he feel about it?
I know that while I was waiting for my operation (I had just an embolization to close off a fairly high flow shunt) I was very bothered about the risk of having a bleed. One of the things I did to reduce that worry was to have a medical wristband made up – I had a soft silicone band made up, a bit like any of the sponsorship or advertising wristbands that you used to see people wearing some years ago – with things like my name, hospital, hospital ID number, my condition, my wife’s cellphone no and some text saying something like “in case of stroke, call 911” and that helped me to feel safer: if I were to be found in trouble, perhaps people would decide to do the right things a bit quicker and get me to the right hospital, the right department, quicker than without. I pretty much wore it 24h a day at some points!
Very best wishes,
Richard
To your question Richard how my son feels about it. I remember him being very depressed when he woke up from failed craniotomy to find out that they could not do surgery. He still had to go through severe pain and anguish because they did open him up. His recovery was very painful. Then he got better realizing that the Embolization did help him stop Auras that he was getting daily before procedure so he was positive about it. Then the Gamma Knife came months later without any complications so far. He does get numbness ones in a while especially on right side facial area and tongue. He had one yesterday. It happens about one time every two to three weeks. I hear you about carrying something with him in case of emergency. That’s my fear as he is out and about doing his life. He hasn’t had a seizure since January 15th so that’s encouraging. Thanks Richard and sorry to reply so late. Thanks and let’s keep the fight going !!!
No need to apologise at all.
I’d say read up on the various gamma knife stories we have here about the recurring numbness: it sounds like something others have been through, though I don’t remember if it has been a temporary thing. Since it is a few months post zap, it may be indicative of things starting to change and might be indicative of increased intracranial pressure, so may be something to beware of for a while.
It’s completely understandable how your son has felt about it and it sounds like he’s doing pretty well emotionally. It can be a complete rollercoaster, as you know (you’ve been on a very similar rollercoaster yourself, I think!) but it sounds like he’s handling it pretty well, which is great to understand. While I see part of my life these days to be to help people like you to deal with the rollercoaster (I like to hope that by sharing my own experience or being able to point you to others’ experience, it helps) and suddenly I was aware that your son might be on a different trajectory!
Really good to hear from you! Very best wishes,
Richard
The “positive” aspect of his numbness is that it’s not expanding but contracting areas affected. He used to get (2Xs) numbness in his right facial area, tongue, right hand fingers and right leg. Yesterday’s was only his right side of face and tongue. Not sure if that means anything but for me it is as it might be shrinking like you’re saying. Hope so. No Auras at all anymore since Embolization. Thanks Richard