So i had an avm removal back in April. Embolization and craniotomy.
First the surgery:
I got to the hospital at about 6am and was taken at about 8 am. First they did an angeogram with embolization. They followed with a craniotomy all on the same day. My husband was called at about 7 pm. Everything went as planned and the avm was successfully removed. It was an avm near my right occipital lobe and was about 4cm. From what I have seen, it was a bit strange that they did the embolization and craniotomy on the same day,but that’s what they did and it worked out.
Post op:
When I woke up I just remembered being tired and not really opening my eyes. The next day when I did open my eyes I noticed it was hard to see. I especially could not recognize faces. I could not tell you what a single nurse I had looked like! I was so worried that I would be stuck with terrible vision but I have improved drastically since then. My biggest visual struggle now is major light sensitivity. I also seem to struggle to read. I read much slower but it is improving. Another thing I have noticed is dizziness that worsens after walking too much. I had spinal fluid removed, so I had significant lower back pain from that for a few weeks.
Something I did not know was the potential of hair loss post op. I did get minimal hair shaved off at the surgical site,which I expected. What I did not expect was the drastic amount of hair I lost 2 weeks after my surgery. I ended up cutting my waist long hair because it started looking too thin. Luckily I have starting to get hair growth back now.
There has not been major changes to my life. I went back to work and regular activities after 8 weeks. The first 8 weeks all I did was sleep allot. It was an exhausting overwhelming tiredness you cannot shake off.
If I had to do it all over again, I would not change a single thing i did. I am so happy I no longer have to live with the thought of a brain bleed. Now I get to enjoy my life a bit more carefree with my husband and 3 kids.
Sounds good! Six months post op is still very early, so I’d hope the dizziness with movement fades away. I had a similar weirdness/dizziness post op that took at least a year or two to fade away. I think my main encouragement is to ignore that weirdness unless it seems significant. I think if we continue to focus on little things that aren’t what we’re used to, they stay prominent, whereas allowing them to fade into the background means that life gets back towards normal more quickly.
Very best wishes for the next six months and onwards!
I have a very similar experience to you. AVM resected in June 25 - left parietal lobe. Like you I had hair shedding which I thought I was just going to go bald being a 41 yo bloke but it has come back. Great to see you are back at work and that you now have a life ahead of you without the worry of a future bleed. I’m UK based and we don’t embolize prior to surgery. It has been interesting to see the approaches taken for AVM patients across the globe in tackling such a challenge. Stay strong. Matt
Yea. It was about a week of really bad hairloss and then slowed down. I totally did not expect it to be so drastic.
You think the UK doesn’t usually embolize or was it in your particular case? A big move to go with embolization prior to the craniotomy was because the feeder was large and they wanted to minimize bleeding.
Through my stroke and surgery I spoke with 4 specialists that do gamma, embo and surgery. They spoke about the USA embo first then surgery but just mentioned that it wasn’t the standard procedure here and didn’t give too much more info than that. Embolizationnis used widely as a treatment itself when the case of fit for it. For me my rupture was too close to the motor cortex so the embo specialists didn’t want to take me on. There may be cases or practices in the UK where embo happens before surgery but in my own experience and meeting others with AVM I haven’t seen it come up yet. Hope your recovery is still going strong. Matt
It is clear from the stories on this forum that embolization is often used as an adjunct to a craniotomy in the USA, to minimise bleeding during the craniotomy; it seems to be very rarely used as a treatment mode on its own, though that seems to me to be less the case (Like I know one person in the US who has had only embolization but I am sure I’ve seen others, I just don’t remember who).
In the UK, as @Spadian says, it seems much rarer for any discussion of embolization as an adjunct to craniotomy and much more common to use embolization as the only mode of treatment: I had a single round of embolization to close off my dural arteriovenous fistula back in 2017 and I am confident that we have at least half a dozen who have done likewise.
Part of the motivation in the UK may be to do the minimum needed to effect a successful outcome as almost all medicine is state-funded, so has a finite funding pot. Part of the judgement of being a doctor in the UK must be “How many patients can I treat successfully given a finite income for the year?” That is clearly not the way medicine works in the US!