I’m sorry you had a bleed. I had mine five months ago and know exactly the process you are going through. Mine is a large occipital/parietal AVM. My surgeon said there’s a 40% risk of leaving me with deficits with surgery. I ended up having Gamma knife three months after the bleed. I have since seen an interventional radiologist (embolisation) who says he would have offered me surgery through the groin which can be easier with deeply located AVMs, but that also has significant risks and is less proven than radiosurgery. If I had less impatient I would have had this as an option (it still is but then I’ve taken two risks…SRS and endovascular surgery). He did say that SRS was a good option for me and that I should feel good about it. He may even have gone for that in my position. I had SRS at Sheffield (UK) who have done 7,000 AVMs and the whole process was amazing. I recommend you seek out a high volume center who have treated many AVMs as experience is key and often locally ahead of the latest published studies which may be a few years old. Things are moving fast in terms of targeting software etc.
My main neurosurgeon who I made the decision with gave me good advice early on. You may have a risk of rebleed, but that accumulates over time, whereas the surgical risk is immediate and irreversible. Therefore you should not rush this treatment decision. 50% morbidity is a very high risk and I would be surprised if conventional surgeons want to take that risk without strongly considering alternative options, unless they have assessed you as having a significantly elevated risk of further bleeds. I have a large draining varix (venous aneurism) and my surgeon still doesn’t recommend a craniotomy.
Emotionally I went through quite a process for the first six weeks. I was keen for surgery, then scared, then it looked like I may have no low risk options and ‘medical management’ was discussed. I hated the thought of leaving it to chance but was starting to come to terms with that as a possible outcome considering I had lived 41 years with no issues and was already feeling a lot better. I’m running again, getting fit and I’m not worrying about bleeding. It’s amazing how you adjust to your new situation, but this takes some weeks/months and it’s worth taking time to adjust and carefully consider your options (subject to your medical advice).
Anyway, long story short my AVM was deemed suitable for SRS (compact nidus) and I have risk to my vision and motor function, and of course a low risk of the usual radiation nasties. Stress should be minimised during the latency period. The vascular surgeon gave good advice on this. Exercise is fine he said because your vessels dilate and he can cycle 50 miles and BP hardly moves whereas he argues with us wife and the veins on his hand pulsate - avoid stress! I’ve been able to reduce my job to two days a week and am enjoying my life, my kids, my hobbies and intend to continue like this (god willing!!) until it’s obliterated. Life is good.
PS: did you have any deficits from your bleed? I have a minor visual field deficit and that’s about it.
All the best,