New Here! AVM in the Thalamus

Hey folks,

Just wanted to introduce myself a little. I’m an owner SM Grade 4 Thalamic AVM, I’ve survived 3 minor bleeds (two IVH, one IPH) with minor sensory loss on my right side. This has given me cause to reconsider radiosurgery - something I was told mixed things about. I’m 24, and this decision has been keeping me up at night. I was hoping to hear from people that have had radiosurgery/volume-staged SRS of radiation sensitive areas like the thalamus, basal ganglia (or basal nucleus).

The funny irony in all this is that I want to be a neurosurgeon when I’m back in good health! I’ve seen craniotomies from about 5 feet away. I’m a major in molecular biology and minoring in creative writing.

Look forward to hearing more from you all!

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Welcome! Hopefully we can pass on some experiences and our own paths that can help you out. My AVM was left temporal, bleed and had Gamma knife. That was back in 2016. It will be 10 years this May since my bleed and found out I had an AVM, and what an AVM was! I have a degree in Biology, although graduated in 1990, but a lot remains the same! If you have any questions, fire away, although our AVMs are in quite different places but hopefully some with similar to you join in. Take Care, John.

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Hi. I had major bleed due avm in thalamus. It was 7 mm but because was in thalamus too. Risky to do any surgery. So had radiation. That was 2 yrs. ago. I did have sensory issues but that’s much better now.i have MRI every year and it has gotten smaller, almost not seen, however hope to get angiogram next year so can document if gone. Hope that helps. Good luck to you. Great that you want to be neurosurgeon.

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I had SRS three months ago to treat an AVM on my left occipital. This was my second AVM- the first was on my right occipital and I lost 25% of my vision when it ruptured in 2024, requiring an emergency craniotomy.

The SRS procdure itself was fine, really- a long day in hospital but my consultant warned me that boredom would be the biggest risk during the surgery and he wasn’t wrong! Totally painless, no sensation at all. Fortunately the technicians had a radio hooked up in the treatment room and let me choose the station- indie rock all the way through!

I had a Leskell-type frame fitted before the operation, and while I was certainly pretty scared as I was being wheeled into the framing room, I’d describe it as more ‘uncomfortable’ than ‘painful’. The pressure from the pins as they were torqued up was an unfamiliar and unsettling feeling, but it wasn’t excruciating and within a minute or two I no longer felt it.

Best sensation ever when they finally took it off at the end of the day, though! A team of nurses leapt into the room like a Formula 1 pit crew, undid all the pins in one coordinated move, and lifted it away all in about twenty seconds. :sweat_smile:

Other than that, I had a bit of minor claustrophobia in the pre-operation MRI which I put down to the fact that the frame was rigidly clamped to a fixture, so I was firmly locked in place inside the tunnel. There was also a cerebral angiogram, which is never fun but beyond a few strange sensations I didn’t feel a thing this time round.

The pin sites healed up within a week of the surgery and the anaesthetic in my scalp took a few weeks to wear off, but compared to the recovery from my craniotomy it was all blissfully easy!

The side effects I was warned about didn’t come to pass, thankfully- swelling on the affected area of the brain was a possible concern which would have meant risk of further vision loss, as was potential left side weakness (based on the adjacent area the swelling would be pressing on).

Overall, while I’m certainly no medical expert on SRS, as a patient I found it to be really straightforward. A bit of an anticlimax after four weeks of worrying, if anything! It’s a fairly well established and mature treatment now- I seem to recall being told that the hospital department that treated me (Sheffield, UK) had been delivering it for 40+ years so even though it looks and sounds pretty sci-fi there isn’t anything experimental or unproven about it!

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Probably not totally related but I have a scar on my thalamus due to the AVMrupture and I’m looking for ways to reduce or even remove it. Because it causes incredible pain.