Hi I'm new... and learning

Hi all,
I’m new to the forum. I was diagnosed several years ago after having been misdiagnosed originally back in 2000 with a seizure disorder. My AVM is in the left frontal lobe above my eye and I have been told it is relatively small. After diagnosis I was sent to 3 specialists to talk about the 3 options… surgery, embolization, and gamma. Embolization is not an option for me, so that’s left me with a choice. I’ve more or less tried to ignore this since then, but my doctor reminds me often how risky having a child can be with the AVM and seizures.

I am not a big fan of surgery because of the large amount of scarring on my face (not to sound shallow) and the risk, but I’m feeling unsure on gamma. Is there much scarring resulting from the frame you wear? Does anyone have an experience they could share?

Hey Beth can’t help I had embo but check out Liams page I know he had it people will come and post back to you on this topic.

I had surgery, most people don’t even nottice the scar unless I’m showing it off. But I have horrably thick hair though.

Not flippant… I got a chuckle.
To be honest, the concept of the halo terrifies me in general although my dr. told me too it’s relatively painless. It’s good to hear no scarring though!

I too am blessed with thick hair… but short hair too! My neurosurgeon told me though that the scarring may very well be on my forehead with the location of my AVM. I hope that doesn’t come across as shallow.

Hi Beth

The halo is relatively painless and I had no scarring. I had embolizations, gamma knife and the linear precedure.

I’ve gotta say, after being through all of this I’m oddly proud of my scar. But I understand not wanting to look a little like fankinstine. :o) I don’t think your shallow at all.

Hi, Beth-
I had the halo (still do if you ask my mom…). Anyway, you can faintly see a cricular mark on my temple if you look really really close, but you’d really have to be looking for it to see it. So, no worries about scarring.

The halo from gamma does not leave a scar. The scars from surgery would probably be faint, but someone else can comment here. Gamma has proven to be very effective, however, there is something to be said for getting it taken care of once and for all (with surgery.)

If you have been able to live with the AVM for 8 years already and can wait a couple more, gamma would be a good choice. If you will be having a child soon, gamma will take too long (2-3 yrs +) and surgery then becomes your best option. Good luck!

After reading all of your thoughts on the halo, I feel like a wuss. My halo was very painfull. I think my DR. must have done something wrong? I had mine put on, then taken off to move a little, put back on, wore it from 7AM to 7PM. Most likely will have to do it again in 3 years but lets hope not.

I have scars all over my head, my hair is very short right now because I don’t care what people think about my scars. It is hard to see them when my hair is longer. I don’t do anything to cover them up, not important.

I didn’t have any scarring from the halo, my hair didn’t grow back in from the bolts on the back of my head but hard to tell unless you have short short hair like me.