i have a AVM located on the left side of my brain. The AVM in on surface of my brain (Dural). The Neurogist that I saw when it was first discovered told me to hope that it kills me if it ever bleeds. But went on the say that most people live normal lifes with AVM’s and most are not discovered until death. My question is should I be more proactive, should I seek a secound opinion have another MRA done? or accept is word as final and live my life as normal as possible. Any help is appreciated.
I had an AVM on the right side of my brain that did burst and I survived with few deficits! Good Luck
Hi Keith,
I'm shocked that your doctor spoke that way to you. Some socially-inept doctors are very skilled at what they do, but there's a really good chance that this doctor isn't skilled with AVMs either. (Especially if he's a general neurologist rather than a neurosurgeon, neuroradiologist, or other specialist). My husband has had some truly awful neurologists--the degree doesn't mean that they know anything about your type of condition, or that they care enough to refer you to someone who does know.
There are many new ways to treat AVMs that were previously considered untreatable, and it's possible that this neurologist just isn't up-to-date. It's best to treat them if possible, but people do live with AVMs, too. A bleed is a serious event that you want to avoid, but you'd have to talk to an expert about the risks of a bleed vs. the risks of treatment in your particular case.
I strongly recommend a second opinion. You can ask on this site for recommendations of AVM experts in your state, or you can see which neurosurgeons are on your insurance plan and google their names to check whether they treat AVMs. Ideally, you want to see one who is familiar with more than one type of treatment.
Good luck--keep us posted on what you decide to do and what you find out!
JH
Hi Keith,
I strongly agree with JH & would also encourage you to get a 2nd, 3rd, etc. opinion until you feel 'right' about the direction of your medical care.
Since you're in/near Sacramento, CA, I'd encourage you contact Stanford http://neurosurgery.stanford.edu/patient_care/cerebrovascular.html &/or UCSF http://neurosurgery.ucsf.edu/index.php/cerebrovascular_disorders.html as their experts are among the best for diagnosing & treating AVM's.
Take care & know you're not alone,
Patti
Hello Keith
I have either an AVM or DAVF on my left side. I am being seen at Stanford by Dr. Michael Marks. I had a stroke due to five blood clots and I am still missing my left transverse vein. Anyway my stroke doctor ordered the MRA and the doctors could not see anything but they do something with the magnets in the MRI machine and it does something to your blood/protons so they could tell at least in my issue that the blood is flowing in the opposite direction. I think you need a different doctor. If you can I would highly recommend Stanford and Dr. Marks. From what I understand that it is normal procedure to do a follow up MRA. But I am not an expert and maybe its the location and the MRA wont show anything but the blood proton thing. I would agree with the rest that you need a second opinion and Dr. Marks is the man in the bay area to see.
Angela
All who responded good thing I followed up. MRA and angiogram confirmed that I have 1cm dura anteriovenious Fistula in anterior Fossa. I am currently refered a neurgosurgeon for consult. Any one ever travel this path?
I would not see that particular Dr again because there is nothing funny about a bleeding AVM. That statement is insensitive, even for a surgeon. I also had a 3cm dural(dural meaning lining over brain) AVM fistula on top of my head, left side. My AVM bled, causing a stroke. They couldn’t find the bleed on the MRI/MRA. It was only when they did an angiogram that the found the AVM. The next day they fixed the AVM by going up my artery and embolizing it with Onyx (glue).
I think you should seek a second opinion from a hospital that is experienced dealing with AVM’s. Every case is different but at least you were pro-active in getting a second opinion. If I had been driving when I had the stroke I could have caused an accident. Or if I had been home alone I don’t know what the outcome would have been. Fortunately, I was with my daughter at the time and she called 911. It wasn’t so fortunate for her because she says she has post traumatic stress from the incident. I wish you the best with whatever you decide. Keep me posted. Be the way, I have a follow angiogram for Feb 27 to make sure the fixed the AVM.
Keith...I totally agree with both JH and Patti.
The first neuro doc I saw told me to do nothing, like yours. A friend of mine told me to see the BEST Neurosurgen I can find and get a second opinion, which I did.. They saved my life.
Please go to the BEST in your area (Stanford..sent by Patti) is one of the best in the Country and get a second opinion.
Please keep us informed on your journey!
Good thing you got the MRA! I hope the new info helps you find a treatment. I don't know anything about DAVFs, but if you use the search function to search the site, I know there are DAVF threads that you can reactivate by commenting on them.