I’m moving along in the process of AVM diagnosis and treatment. Last Thursday, I had my cerebral angiogram, which revealed a 3.5 x 2.7 cm AVM with deep venous drainage into the middle cerebral vein. There aren’t any aneurysms noted. In the recovery room, he gave me a grade 4, but in the Op Note, he gave me a Spetzler-Martin grade 3. It is located in the right parietal lobe. Could be the grade 4 incorporates the Lawton-Young supplementary grading system and takes my age into consideration (66).
I am being scheduled for embolization and radiosurgery. He said he would like to be able to do one embolization, but it could take two. He also believed I would have one radiosurgery session, but I have to have a consult with the radiology oncologist for all that.
Angiogram was not as scary as I thought it would be, and I am feeling pretty good. A little sore in the groin area still, but overall, good.
I will call scheduling tomorrow and get on the books for the embolization and consult. Moving right along.
Just wanted to update with where I am after angiogram.
If it helps, my consultant interventional radiologist (in the UK, the guy who does embolizations) said he might have two approaches but on the day was happy he’d got me fully in one go. Once I’d done the first round, I could have gone round twice, no problem. The fear of the risks they give you is part of it but the fear of the unknown is at least as big a part!
I’d say the reason for the combination with radiotherapy is that the catheter for the embo only fits through the larger vessels, so if you’ve got a bunch of smaller vessels that need shutting down, radiotherapy will do that where embolization can’t get to.
The embolization is very much the same as the angiogram except it’ll take longer and they’ll be injecting glue and/or coils or other “embolic material” into the vessels that need closing off. You’re under general anesthetic (I guess because it takes longer and so you don’t fidget or move around). There’s only the risks of stuff going amiss that anyone is bound to bother about but assuming it goes well, it’s a very gettable throughable thing
Thanks much for your info and knowledge. After having the angiogram, I’m not AS nervous about having the embolization and realize that doing nothing really isn’t a good option.
I thought I remembered that your experience was very similar to mine. Did you also have radiosurgery?
I am three days post angiogram and am surprised how much I am sleeping still. And my groin area is pretty tender. Other than that, I’m feeling good.
No, I only had the one embolization. I was just explaining one of the reasons why embolization might need something else. I pretty much had a straight shunt into my right transverse sinus, no nidus, though the doc said he used lots of glue and filled a bunch of draining veins as well.
While I’m positive about the outcome I had, I have to say it took me a long time to be ok about it!! I was unconvinced that I’d been fixed in that one sitting and mithered my way through the subsequent 1½ years post op, concerned that the weird effects I had post op indicated more to do but I eventually decided to believe the doc and after two years post op decided I was ok. The truth is that today I’m perfectly good, so it was just a matter of getting used to the re-plumbing that had been done, all of the pressures high where they are supposed to be high and low where they are supposed to be low.
Thanks for the info. I can understand why a feeling of not being “fixed” after one treatment would occur. I would be surprised if I don’t feel the same way! I imagine it will just take some adjustment time all the way around.
I already kind of worry every time I feel a weird sensation in my head. So I guess that’s just going to be a part of this experience for a while.
You’ll have to tell me! I might be just waaay too analytical! I get the impression others have gone through much easier but I don’t want to tell you it’s altogether easy because there’s a full range of outcomes available
Good luck! Let us know when you’re in because we’re all interested to cheer you along as best we can!
Hello @JudyB ! My son technically went through both Embo and Gamma Knife in 2024. I say technically because also a failed Craniotomy, which doesn’t count as actual treatments performed . The Embo went fine and my son stopped having Auras almost right after the procedure. He used to get Auras according to him almost daily. 3 seizures even though I only experienced one, which is the one that took him to the hospital. Gamma knife also went fine two months later . You know the thing that got me going as a his father was an obsession to the machinery that was to be used for my son. I looked into everything about it and was very impressed with how precise it would be as per radiation emitted to surrounding brain tissue . It was called ICON made by Elektra. I was done at Houston Methodist. I wasn’t worried upon my research. They used a face mask and not one screwed into his face . My son called it the iron man mask. Therefore, do the same for yourself and ask about the doctor to perform both procedures, the machine to be used to know its top of the line and ask about the mask too. Certainly we are here to add support for you and prayers. Good luck to you!
Hello and thank you for this information. I am a researcher (medical transcription in my background), and am checking into all of this. I appreciate your input. I probably wouldn’t have thought to check on the actual machine being used!
