Hi, I just wanted to given an update on Luke’s treatment and progress. He has recovered well from the first embolization and is scheduled for his second one tomorrow 1/30. The only issue that he mentioned to me is sometimes he can’t think of common words when he is talking. He told me the other day “I think this AVM is starting to get to me because I can’t think of words that I should know”. I told him that he doesn’t seem to have any trouble with having conversation from my perspective. I think it is a subtle change that he has noticed because he is very self aware and introspective. Even so, he has a good attitude and still maintains his position about wanting to have the surgery and says “I just want it out”. Although I may be biased, he is truly the bravest 11 year old kid I know
Tomorrow he is scheduled for an angiogram with embolization of the second of three large feeding arteries. We will then wait another 3-4 weeks before the final embolization and surgical removal of his large AVM. We are hoping this one goes as well as the last one with no complications.
I appreciate all the support and thoughts for Luke! I hope that everyone has had a positive start to the year 2025!!
Wishing the best to Luke and you tomorrow. After my bleed I suffered from Aphasia, or loss of fairly common words. I mostly recovered but adapted when it happens and use a different word. A bit of an adjustment but I’m the only one whop knows when it happens now, which is rare. Once I got the lost word back, it stayed. Luke, you and family will be in my thoughts tomorrow. John.
Hey Brandi,
I didn’t have an embolization, but rather a craniotomy and that “can’t think of the words” Ohh yea, I know what that’s like. I needed time to process the information, then find the appropriate response. Some people interpreted this as me being slow or tried to finish my sentences for me, which only enraged me further. I knew what I wanted to say but the words wouldn’t come. It used to be that I was rather diplomatic and careful with my choice of words so as not to offend. Post surgery I’d say exactly what I was thinking, often including expletives, with no filter. If someone was being an idiot I used to say something like “That behaviour is not appropriate” and suggest an alternative approach. Post surgery “Hey dickhead, pull your F&^%$ head in…” inflame the situation, insult everybody, then feel guilty for offending. The medicos assured me they went nowhere near those information processing regions of the brain, but I could offend without even trying (could you imagine if I’d tried to offend )
My neurosurgical journey started when I was an adult, I could not imagine going through all of this as a child. Much respect to you and Luke, it’s not an easy journey for anybody involved, you included. Recovery from neurosurgery is a slowly, slowly thing and the slower he takes it now, the better the longer term outcome.
Luke’s second embolization went very well, thankfully! The neurosurgeon was able to successfully perform an embolization of the posterior parietocciptal AVM. He has decreased flow now to the posterior part of the AVM as well as the apex (tip of the nidus). The next embolization will be the final stage and surgery will be performed a day or two after embolization. There is one small deep feeding artery that he would like to be able to embolize before the resection, but has so far not been able to get far enough into that vessel to be able to do it. We are hoping after this procedure the shift in flow will allow it to open up more and he can get into it during the next embolization. If he can embolize this vessel, it would further reduce the risk of bleeding during surgery. The date for the last embolization and surgery will likely be around the first week of April but still waiting for confirmation of that.
@JD12 I’m glad to hear that you have been able to recover and/or adjust to the speech difficulties you’ve had. We are hopeful that with Luke being so young that he will be able to recover from any of these difficulties he may experience during this as well. Thanks so much for the positive thoughts and sharing your experience!
@ModSupport I have shared all of the information from here with my husband in anticipation of us needing to be very patient and understanding after Luke has his surgery. It is definitely helpful to know ahead of time some of the challenges that Luke will have post craniotomy. We have been very fortunate that the embolizations have gone very well with just a few subtle issues noted. I know that surgery will be a whole different ballgame and I’m not even sure exactly how to prepare for all the things we may encounter. But every experience shared here will be helpful in getting us as close to ‘ready’ as we can be. Honestly, I just feel very fortunate that we have found this incidentally and have the time to prepare. Most do not get that kind of advantage. I really appreciate you sharing your experience and glad to know that these things will improve over time. Thank you so much!
I’m not sure Merl’s neurosurgery stories are always helpful, to be honest!
While a craniotomy is undoubtedly a major assault, actually it seems to be a very successful treatment and at least as often as not, without complication. I wouldn’t look upon it as any more dangerous than what Luke has already done. Having an embolization and coming away with like a 6mm scar in the groin looks very minor but it’s not minor when you’re re-plumbing your brain, so don’t get extra jittery about the craniotomy because it’s very widely practiced and very successful. It’s not worth worrying your way to April for.
I’ll be interested to understand how Luke gets on post embo no 2 because I think it is quite weird to be part-embolized: he might find it perfectly ok or he might find it more weird than previously. I can honestly say I found my full embolization in one sitting to be very weird, so I hope he gets on brilliantly with it but I will be interested to understand if he finds it rather challenging.
Thank you for the update! I hope everything goes brilliantly!
So far he seems to be feeling fine! He was even able to got back to school today at 4 days post op. His biggest complaint now is the incision site is sore and itching. That and a few episodes of feeling dizzy when he gets up too fast seem to be the only noticeable effects. I am glad that they are doing staged embolizations in order to minimize the effects. When we first discussed the plan it seemed that he would have one embolization with surgery the next day but over time the decision was made to do staged embolizations due to the complexity and high flow of his AVM.
As far as the craniotomy goes, you are right about it being a fairly routine procedure that is done very often successfully. It is just hard to wrap my head around that fact considering what they will doing during the procedure. Thank you for reminding me that it is not something to get too worked up about. His neurosurgeon actually told us that some kids can return to school 10 days post op! I sure hope that Luke gets along that well after his surgery.
Thanks for the well wishes for Luke! I am ever so grateful for all the information shared on this site.
We definitely have some great success stories here about people of all ages doing very well through a craniotomy and going back to normal life very well. Obviously, there are risks and I don’t want to appear to promise that all will be good but we definitely have people here who’ve come out of hospital in like 3 or 4 days and gone from strength to strength, especially younger people. So there’s everything to hope for.
It’s really interesting to know he’s doing so nicely! My single shunt, seemingly very straightforward DAVF got closed off in one embolization sitting nearly 8 years ago and it was very weird post op. Very odd pressures and sensations in my head for at least 1½ years. But I’m still here! I’ve basically ignored the tiny feelings and just got on with “normal life” to the extent that life is normal.
Fingers crossed that everything carries on going the right way for Luke! It’s really good to know!
I am glad to know that your symptoms post op improved or at least became more tolerable over time. I can imagine it would be quite scary to experience these things first hand and not know what else may be coming. Luke told me this morning that when he stood up he saw a “flash bang of colors” which he described as all different colors in his vision. It happened quickly then went away. This is interesting considering he has had minor visual changes already with his AVM. It will be interesting to find out what our new ‘normal’ will consist of in the coming months/years.
I appreciate the link to those stories! I am reading as much as I can and I will definitely check these out. Thank you Richard!
The other thing I experienced post embolization and again after the repeat angiogram to see how things were was a scintillating scotoma. I had these from several days (maybe even a week post op) for a few weeks. e.g. the image on this page https://www.mountainviewoptometry.com/seeing-flashing-lights-could-be-a-migraine
My scotomas appeared as a teardrop shaped blur in the centre of my vision and grew to a C-shaped blur with jagged teeth over a matter of perhaps 10 minutes, then took a further 10 minutes or so to disappear!! These are effects that are often associated with migraine “aura” (harbingers of migraine) but myself and another person on here determined that it was probably a migraine-like effect induced by the irritation of the contrast material used during the embolization. It was worrying initially that these occurred – very unusual and very unexpected – but after perhaps three weeks they had become less frequent and then stopped. They occurred again after the repeat angiogram to see that everything was closed off by the embolization, as I mentioned, but I’ve never had them since. My assumption is that it was the contrast material (and the sheer volume of it) that led to that irritation and re-irritated things only a few weeks later. When I had a further angiogram a year later, I didn’t have a repeat of the scotomas, which I guess is because there was no existing irritation and insufficient contrast material to provoke it again.
So if the shiny shape appears and resolves over about 20 minutes, it could well be a scotoma for exactly the same reasons as mine and just to do with the recent irritation.
I’ve not had any such effects since shortly after that angiogram in late May 2017.
Hope this might help. Always share worries because sometimes we might have anecdotes like this to share.
Thanks for sharing about your effects! It is definitely helpful to read these stories and know that these things can happen.
As a matter of fact, I ended up taking Luke to the ER yesterday for a headache. I got a call from the school nurse that Luke had a headache that he described as “very bad and pulsing” that started suddenly while sitting in class. He said the also felt nauseous and dizzy when it started. Naturally, I was very concerned and so was the school nurse. When I picked him up, he was still complaining of a headache but said it was a little better by the time I got there. But I did not feel comfortable waiting it out because of the way he described it as “pulsing” and having the other symptoms along with it. So, I went ahead and took him to our local pediatric ER and they pretty quickly ordered a CT for him but thankfully there was no new abnormalities on the imaging. The ER doctor at our local Children’s Hospital said we were correct to be concerned with his presentation but sometimes these things happen with no good explanation. To be honest, I think he probably has picked up a viral illness because he still isn’t feeling well today. You just never know though if something is serious or not. In this situation, I would prefer have an ER visit that ruled out a bleed rather than wait and have something be seriously wrong.
The ER doctor said that he sees kids with AVMs from time to time and they will have these kind of weird sensations and mostly they end up being fine. But typically a severe headache or especially accompanied by nausea and/or vomiting, dizziness or any neurological changes are always to be taken seriously.
I will definitely have grey hair by the time this is over
You’ve both done the right thing. Even after being “fixed” in one sitting, I had a very wandering route to feeling ok again. It is definitely not a straight line to neuro recovery. There were days when it felt I might be getting better but other days when it felt distinctly otherwise.
I remember taking my mum to London for the day in Aug 2017 and realising I was not as well as I thought I was! And later, in the Sep or Oct (I think Oct) I had a day or two of distinct dizziness which felt very unsuitable and propelled me back to the GP. If I’d felt in immediate danger, I’d have done exactly as you guys did and gone to the Emergency Room but fortunately never got so worried as that. I got checked out at hospital after my dizziness episode but nothing was visibly amiss, so we took it as “still need to get used to the new pressures”.
However, it’s very difficult or impossible to sift the “safe to put up with” from the “danger! danger!” signals, so if it seems dangerous you’ve got to do what you did.
I know … I think I’ve aged ten years dealing with my son’s AVM since 2023. We’ve been to ER 4 times in one year even after he got Embolization and Gamma Knife early 2024. Glad your son is fine and that he feels better soon! God bless.
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