Does anyone have experience with diffuse intercranial AVM? My 9 yr. old daughter was diagnosed with diffuse AVM and will be undergoing angiogram for a clearer image. My readings on the internet scare me in that it appears that it may not be operable. That is real sad news for me since I was led to believe that it was small and could be easily removable by the neurologist that reviewed her MRI. So the story went from bad to good to now worse.
I’m sorry to hear the news, Tony. Try to stay optimistic, especially around your daughter. While the doctors’ opinions may be bouncing back and forth, the angiogram should provide a much more concise answer as to whether or not the AVM is treatable. As detailed as MRIs are, there is no comparison to being able to see the flow of blood through the vessels in real-time.
Tony
I had three angiograms and 3 months later before my first bunch of doctors came up with their ideal treatment,I listened and found more doctors.You have just started on your journey as bad as I hate to tell you that,as Jake said you have just begun to bounce.After you get done with the angiogram you will have more information to help guide you and your doctors with.One of my Dr told me we are doing thing today that when you scheduled your treatment four weeks ago we wouldn’t have considered then .And if I say if its found to be inoperable doesn’t mean it untreatable. Hang in there Dad and yell at us if you need us Gordon
Tony, you will have a much greater idea of what you are dealing with once your daughter has the angiogram. There is only so much they can tell from an MRI. The angio will tell the whole story. I wouldn’t try to figure out too much until you get that information, because every AVM is unique, and you really won’t be able to tell what can and can’t be done until you have that piece. I know it is hard to be in the waiting period between tests, Dr. visits etc. That about killed me when we were going through this with my 10 year old. What is the location?
Thanks for the remarks and taking the time to post. I had a horible day at work as I just could not stop thinking about my daughter. It is safe to say I was not too productive today. I pretended to read documents when I could not think about anything but the AVM.
I will need to wait and not jump to any conclusions so thanks for the wise words. Morgan’s MRI show the AVM on her left hemisphere in the midle top superficial. Closer look of the AVM revelas two dark spots that are few inches apart with healthy brain cells in between though. That makes it appear diffuse. I will need to wait for the angiogram.
Dr. Martin mentioned that it is curable, but he was in a rush. Dr. Duckwiler (embolization specialist) reviewed the scan in detail and said he cannot recommend anything at this time without an angio. But he did mention that it is diffuse AVM from what he can tell.
I will keep my fingers crossed.
Oh Tony, I can so relate to what you are going through. We were just there not too long ago. There were days when all I could do was think about it, especially days when I was waiting for Doctor’s calls that never came, and was very unproductive. Thankfully everyone was very understanding. The best advice I got was to not look any farther than what was currently in front of us. That is when the worry really sets in. Just try to let it unfold and deal with things as they arise. The whole process took us 5 months, and I now feel like I came out of a tunnel, and can’t figure out how we got to March already. Hang in there! Our Faith was also a huge part of what got us through. We will be praying. Keep us posted!
Came back from angiogram today and it was concurred as a diffuse avm. Initial indication is do nothing since it is too complicated and dangerous. Will meet Dr. Martn of UCLA to review options in more detail. Crap, I can’t beleive this is happenning to my daughter. We may need to take the chance and skip the operation since the operation may pose greater risk. But need to take one day at a time. Anyone ese outthere with diffuse AVM? What are you guys doing about this?
I’m sorry that you didn’t get better news. That stinks. It is so tough seeing our children with this! You are doing the right thing, taking it one day at a time, for sure. Have you thought about getting another opinion? I know that Dr. Martin is supposed to be really good, but maybe you could have Spetzler look at it at Barrows as well. It might at least make you feel better knowing that they are in agreement. Obviously, meeting with Dr. Martin will come first. We are praying for you and your daughter as you walk through this difficult time!
After much gut wrenching days, it became natural to think I need to get several highly qualified opinions from having read this forum. With that said, I plan on sending the disc of Morgan’s angio that reveal a diffuse AVM to Dr. Spetzler, Dr Lawton of UCSF, head of Neursurgery at Toronto Sick Children’s hospital, Dr. Carson at John Hopkins, and maybe Dr. Pollack in Pitt. Being out of state it appears that it is a common practice and doctors are wiling to review the angiogram. I will not accept the fact that I will not let this disease defeat my daughter or myself. From reading the interent though, it appears diffuse is best left alone, but the chances of a hemorrhage is too high when looking at a 30 year span, 2%x30=60%!, not acceptable.
Has anyone herad of any new upcoming technology that could treat a diffuse AVM in 5 to 7 years? Thanks in advance.