I have SO many questions

I have so many questions, so if yoiu get tired of reading just tell me to be quiet…lol

  1. Can this AVM start to hemmorhage again?
  2. Can it get larger?
  3. Can it cause an aneurysm?
  4. Will it be treated no matter what or will I just live with it?
  5. Is there a chance that it can come back?
  6. Is it possible that a new one can pop up in another place in my brain?

Hi Wendy,
If your doctor or neurosurgeon does not seem familiar with your condition, get another doctor. There are a few places with a lot of expertise in AVM. I know you might not live near those places (Pittsburgh, Cleveland Clinic, Mayo Clinic, etc) but most, if not ll of theses places will do second opinions by mail. What this means is that after you get all your tests done (MRI, angiogram, etc) get copies, and send them to one (or more) of these places. They do it all the time. There is also a Mayo Clinic in Arizona, which might be close to you. I think finding the right doctor, who has experience and that you are comfortable with is SO important. Just like you probably would not let an inexperienced cosmetologist cut your hair, don’t let a doctor with little experience treating AVMs give you brain surgery. That could be a bad haircut that simply won’t grow out. I know you are probably eager to get this resolved and move on with your life–and you will–but I strongly encourage you to seek out one of these expert centers. I did, and my insurance covered it just the same as if I had gone to a different hospital. Good luck with everything, and hang in there!

Hi Wendy,
As far as I know, everything Liam said is correct. And Marilyn is absolutely right about seeking the advice of an expert. You may not have had an angiogram for a number of reasons–your doctor may not think your AVM is serious enough to need it (again, consult an expert), they may not want to burden you with the cost (angios are very expensive), or you may have a type of AVM that doesn’t show up well on angiograms (mine doesn’t, but I don’t think they knew that until they tried). If you don’t have any major neurology centers near you, I recommend doing as Marilyn suggested and emailing the neurology/neurosurgery departments at some of the big clinics. You could call their general lines and ask whom you should contact, or you could search staff profiles and just email whoever is listed as an AVM specialist. You may never hear back, but it’s worth a try.

If you can afford to shop around for neurologists/neurosurgeons, you could also just try seeing another local neuro. Your MRIs are yours, so you can take them wherever you please. A different neurologist or neurosurgeon in your area might know of someone in your state or in a nearby state who has experience with AVMs.

And, after looking at the US News and World Report hospital rankings for neurosurgery, it looks like Methodist Hospital in Houston is highly regarded, at least for neurology/neurosurgery in general. If I were you, I would start by having your local neuro refer you to a neurosurgeon there (you or he can try to search staff profiles for an AVM specialist). If you don’t think the surgeon you’re referred to is competent, try somewhere else.

Good luck!