I was diagnosed with a small avm behind my right eye in November 2009. Since then I have had an angiogram and talked with 2 different nuerosurgeons that have two totally different ideas on my next step. One Dr wants me to have embolization and the other wants me to take the AVM out. I don’t know which one I want to do. I don’t want to be high risk for the rest of my life but I also don’t want to have seizures. Right now I don’t have seizures, just migraines and vision issues. I am so confused and I don’t have a lot of time to sort things out. Any advice?
I would go for a couple more opinions. Typically, surgeons don’t do embolization without following it with Gamma or Cyber Knife, or surgical resection. Embolization alone hasn’t proven to be very effective by itself for permanent obliteration of AVMs, or at least, that is my understanding.
Sounds to me like its time for another opinion. I don’t know who your drs are but I’m sure of one thing there human and we all like to work with in our comfort zone .If one dr has done a lot of one thing and the other has done the other! I think you get my point . You live relatively close to one of the world best place for this treatment the Mayo clinci. Good luck Gordon
OH by the way Welcome to the site.
Thanks for the insight. I am so worried about all this I have broken out in hives. I wasnt worried until yesterday when they put the smack down on me about the surgery. Both of the doctors are saying similar things. The second doctor said he would do the embolization in conjunction with removing it. He said he wouldnt leave it in there so it could rupture during childbirth or for any other reason. I may get another opinion but I feel that each additional opinion is getting worse.
I know it seems like a hurry, but take your time to get all the information/opinions you can, in order to feel comfortable with the decision. My daughter had a hemorrhage, which is how we found her AVM, and I was in a big hurry out of fear, but ultimately, it took 5 months to determine the best course of action, and choose a surgeon. She just had embolization, and surgical resection last week, and is doing remarkably well! These are big decisions, so take your time.
I would consult with more doctors - I have heard that embolization does not work by itself but there are otehrs on this site that have said they are AVM free after embolization only so? One thing I have learned is no (2) AVM’s are alike and neither are any of our stories although they make have similarities. Best wishes -
Welcome to the site! I too would seek out another opinion and keep doing so, even if it involves extensive travel, until you do find a doctor that makes you feel 100% at ease with his recommendations and remember to ask lots of questions as well!!
My Doctors have been very open. The Neurosurgeon gave me his email address and told me to ask as many questions as I wanted. I sent two lists of questions last week and he responded within an hour. I was able to share the questions and answers with my family. I also did a little research on him and the hospital to be sure these folks weren’t going to mess up my brain. I am also lucky because I have 3 doctors in my family, emergency doctor, urologist and a anesthesiologist, and two hand fulls of nurses. They all told me to have surgery before the angiogram but I still held out hope that I wouldn’t need all that. After much pray and consideration I decided to move forward with the surgery. It is scheduled in 2 weeks. This is the best time for me considering my family, job and probably emotionally. I had planned to party it up for my 30th but I will still probably be recovering. I am a little bummed about that but life goes on and I can party it up later. Thanks for your words and thoughts. Ill let you know how things go.