Last year dec 9th I was diagnosed with left occipital sulci and cortex AVM. My symptoms include persistent headache with mild flashes sometimes and astigmatism and recently can see lot of eye floaters. My headache is mild to moderate and I am doing my daily works without much trouble. My interventional neurologist recommended me to wait for some years and if I want to go for treatment, embolisation alone or combination with gamma knife will be done. AVM size is 1.1cm x2.5cmx3.0cm. Symptoms had started after a sequence of stressful events in covid period which developed my anxiety too. Although I have recovered from anxiety, but need your suggestions regarding to AVM treatment and its side effects.
Hi! Welcome to AVM Survivors!
Usually, the reason doctors recommend a bit of a “watch and see” approach with AVMs is because they are more certain that they will do you some significant damage (and therefore you’ll have a better quality of life in the meanwhile if it is left alone). Is this in line with your doc? Does he tend to indicate some significant deficits likely from an operation?
Or, does the sulcus form part of the Dura? I can see that it is relatively on the surface. If you have a dural fistula, these can be classified as not needing intervention.
I had a dural fistula and it was treated by embolisation alone. I’d say it took longer to feel well than I expected but otherwise it has turned out well so far (5 years post discovery, 4 years post op).
I hope you’re doing ok.
Very best wishes,
Thanks for your reply. As I am pursuing my PhD, I had asked my doc whether I need to take the treatment immediately, for that he replied chances of its bleeding are low as of now, so I can wait and watch if its symptoms disappear. Since I haven’t undergone angio he was not able to confirm the treatment method, but assured of lesser risk due to its location and size (10% risk). Also when I asked about the embolization method he believed that he would be able to embolize 95% of it (for rest of 5% he said that as doctor he can’t assure any patient of 100% success and recovery and we have to take that 5% risk).
How long do you have before you complete your PhD? An angiogram tends to be just a day in hospital and if an embolisation goes nicely, less than a week in hospital, though it does wear you out for quite some time.
I am planning to complete it to the end of this year.
Sounds good! In all likelihood, you’ve had the AVM from the womb, so it has been there a long time already.
Mine was a different type and developed or changed quite quickly. I could hear mine because the noise of the discharge into the vein was into a vein that passed by my ear. I first heard it in Sep or Oct 2015 as quite a faint whoosh, whoosh noise and it increased in loudness through 2016 to the extent that by Easter, I was really quite concerned as to what the noise was. By July I had managed to record the noise by pressing my mobile phone to my head in the right place and I got a formal diagnosis at the end of August 2016.
I had to wait until April 2017 for my embolisation procedure and I have to say deteriorated up to that point, getting louder noise and more dizzy. I think I started to get dizzy from about Oct 2016.
So you can see an example of how mine changed. Yours will follow it’s own course.
What I would say is that if you get any changes, go and see the doctor; and if you get anything sudden or severe, go to the emergency room. There’s no point in doing a PhD to have your AVM forcibly undo any of your learning!
Are you going to have the angiogram done meanwhile?
Very best wishes,
Thats true. I will get my angio done as soon as possible.
I have right occipital, similar size AVM, SM grade 4 as the drainage is deep. I had gamma knife at Sheffield two years ago and am due a scan to see if it is working. I’ve had mild side effects but did require some time off due to my bleed (which is how I was diagnosed) and I felt some fatigue and headaches from the gamma knife which passed after a few weeks.
All the best with your treatment decisions. My docs advised that exercise is ok but stress is to be avoided! You should ask for advice.
May I ask you to provide me the exact details as explained in MRI?