Hi I’m new here and have been told I have a sylvian fissure avm. Looking for if anybody has had these types of symptoms as I have been told I have not had any bleed by multiple doctors.
Anger
Personality change
Headaches. Never had one before this all began and before I even knew what an avm is
Anhodenia
Zero impulse control
Cloudy thoughts
Can’t concentrate
Always crying
Impulsive
Depression
Obsessive thoughts
Cycle thinking
Please if anybody has had any of these with a Sylvia fissure avm let me know
Welcome to avmsurvivors! It’s great you found us and I hope some of us can help you along the way.
Having a brain AVM is among the more common troubles in this group, so I very much expect to find some people who are going through similar things to you. Headaches are definitely a common feature with a brain AVM and the treatment options (if it is recommended and you want to undergo treatment) are limited to about three different types, so there are many of us who have faced what you may be contemplating.
The sylvian fissure is also known as the lateral sulcus (I think) and it seems to be between the frontal, temporal and parietal lobes. As such, you may have troubles in common with any of those of us with AVMs in a similar area. From what you’re describing, I think you’ll have plenty in common with @BrainFrontal and @BrainTemporal members. You’re definitely having a tough time.
Welcome! I hope that as you learn about AVMs we can help you along the way.
A neurosurgeon has told me those symptoms do not make sense for a sylvian fissure avm but I was so happy and never had any issues then everything described when I got my first ever headaches and avm was found 4 months after all this began.
Am I crazy to believe the two are correlated? Thank you
There are plenty of us here who have been told our headaches are not related to the AVM but it is so common a thing that brain AVM people have migraine-like headaches that there has to be a connection. Having said that, no sensible surgeon would tell you that doing an operation will remove a headache.
Really sorry to keep bothering you man this is just the first time in 6 months I have got anywhere.
I can live with headaches it’s all the other stuff that they say is not related to a sylvian fissure avm that has come out of nowhere that they say should have no relation but has just been such a massive coincidence I have never been anything but a happy loving cheerful person and it has all just come at the same time. Thank you so much for your time.
I don’t know which of your issues relates to what but things like the personality change and impulse and all that, I’m sure we will have other folk who are in a similar boat. I don’t remember which is related to which lobe but we will have others going through the same real challenges.
My own theory is that it doesn’t matter where the AVM is per se. What matters is how it is affecting you. Sometimes I think it is the effect of the AVM itself pressing on a part of the brain – and you’d expect that to be very local to where your AVM is – but sometimes I think it will be related to where it is stealing blood pressure from or over-pressuring blood, and I think that can be wider than the location of the actual AVM. I’m not a doctor, so completely unreliable in this way but it makes sense to me that if you’ve got an issue that means part of your arterial blood flow is reduced from a certain point, the impact of that low flow could be all along the remaining part of the artery and whatever it is supposed to be keeping nicely supplied with oxygenated blood. Conversely, wherever your AVM is discharging high pressure blood into a vein, the effects of the wrong flow into that vein will travel as far as the disproportionate pressure.
My AVM was a dural arteriovenous fistula that was discharging into my right transverse sinus, i.e. just right of the middle of the back of my head. The effect of it was that I got high pressure disruptive flows past both ears (so I could hear it) but I think the flow was so high that it was causing reverse flow up towards the top of my head (through the sagittal sinus) but possibly also the wrong way along my straight sinus. I also had it inflating veins on the outside of my head, the pressure was so high. Mine was a fistula, which I think means it was a pretty direct connection from an artery into the vein (and into a big vein at that) but I’m quite sure the effects of the flow were not very local. Yours may well be much smaller but I’d say it depends on the effects on the flow of blood as to how wide an effect it might have.