I had my appt yesterday with the Neurosurgeon and his recommended treatment plan for me is angiogram followed by embolization followed by embolization followed by radiation. I have looked up embo on here and am getting a little freaked out. How risky is it? Is there a better option? Should I seek another opinion? This doc seemed very knowledgeable, was Chief of Neurosurgery and has worked with 100’s of patients with AVM’s and has had lots of success. I trust him and he came recommended by my Neurologist as she had back surgery by him. Anyway I didn’t realize that Embo could cause seizures or hair loss … I’m reading that on here. Is this true? How long before you feel normal or can resume regular activities after the procedure?
Hi Rachel, it looks like you’re going the same way I am… my doctor’s plans for me are the same as yours for you!
The angiogram was quite easy to sail through, now I’m waiting for some more tests (to determine if I can handle the embo?)
I’m happy for you that your doctor already has a lot of experience in his field. As AVMs are so rare, it’s not a standard operation anywhere in the world yet, but as there are less than 300 AVM-patients altogether in the Netherlands it’s a scary thought to become a patient at a university clinic where doctors might be young and unexperienced. I do trust Dr. Lo, from what I heard he’s done this kind of procedure several times before with success. But would any surgeon in the world admit it if patients didn’t have good results? Probably not.
I guess we’ll just have to trust our doctors to do the right thing for us. Yes it’s risky, yes there can be hair loss from radiation, but I don’t think that’s permanent.
The important thing is that they save our lives, right? I’m convinced it’ll all work out in the end… if it doesn’t, it’s not the end
Another doctor’s opinion could always come in handy, but your doctor seems to already know pretty well what needs to be done. Please keep us up to date as you’re waiting to hear more!
Hey Rachel. I’ve had numerous embolizations for my AVM…seriously I’ve lost count but I’m thinking maybe about 30ish? Granted, mine go to my face and not to my brain, but I imagine that the patient experiences the same thing regardless.
Honestly, they put you to sleep, you wake up and have to lay flat for a few hours from the cut to the artery (groin area) and then they might keep you in the hospital or they might send you home. The last 10 that I have had I have gone home that night. I feel a little under the weather for a few days from the treatment (not sure how you will feel) but honestly within a few days I’m back to myself.
I don’t want to say it isn’t a big deal…but as far as what you will experience, I don’t think it is a ton of drama!
Shalon explained the angio really well…I know that in my case; I had 2 angio’s before embolization to check each artery that fed the AVM to make sure they(arteries) did not feed an important part of my brain…I bet they will be doing that first. I did lose my hair on the side of my head where the xray type unit is…that is due to low dose radiation-It was weird to lose my hair-but I was glad that I was alive to complain about it!! In my case, they put me out like they would in the OR-breathing tube- because they had explained that they had done studies with people with mild sedation; can it was painful, and you need to lay very still-so it is for your safety and benefit. I after each emboliztion (i had I think 5) I spent the night in the ICU for observation-because they are changing the blood profusion in your head. I did have horrible migrains-they also warned me of a weird side effect–you will smell like creamed corn!!! that is just part of the glue as it settles out. So, in short;if you lose your hair-it will grow back-anytime they are in your brain you are at risk for seizure or stroke. Your body naturally reacts to the catheter as a forgien body and wants to form a clot around it-they do use alot of blood thinners though. I am on seizure meds…was off for 3 years-had a sz in September…they think it is from the scar tissue from my craniotomy…If he feels that your AVM has the best chance of treatment with embo-go for it-but if your gut is still unsure-it is always ok to get another opinion…
Best of luck
lee ann
I know the idea of a procedure that involves your brain is scary, but many people seem to have had positive experiences with them, including myself (2). I am scheduled for a third and then gamma or proton-beam.
It seems like a lot but it isn’t in the the long run. Check on the surgeons record. I also noticed there is a doctor that can be called for a second opinion (It is a Forum question. You might want to check that out.
