Glimmer of hope

Well. We have been doing a ton of research and been getting some feedback from the best AVM specialist around the country. I hope I can be of some use with the research I have done regarding AVM.

Regarding my daughter's situation she has a very unique diffuse AVM which is more spread out than a normal diffuse. Bad news is it is inoperable due to the brain coverage since any of the three treatment options will cause serious damage. That news basically brought me to my knees. The good news is she has multiple draining veins and arteries (feeders) are small so there is a smaller percentage of hemorrhage than the casual 2-4%. The head of Neurosurgery at UCSF provided a glimmer of hope by saying that he did not think this type would lead to a rupture. OMG..the words brought tears to my eyes obviously. Anyways, we are awaiting more opinions so we can somewhat validate the risk since nothing is a sure thing except taxes.

Regarding my research, here are some of the important conjecture I have made regarding AVM after having read so many medical journals of new.

1. What increases the percentage of hemorrhage is increase in blood pressure. Your diet or physical structure can increase blood pressure as well obviously. What you can do however is control your diet. So please be very dicipline about what you are eating. Also it may be worthwhile to take medication to reduce cholestrol and blood pressure if watching diet itself is not sufficient. You can do your own research on this topic.

2. There are some statistical signs that unruptured AVM's have a 1.2%/year chance of hemorrhage rather than the 2-4% that many older articles reference. There is an ARUBA study going on that will try to determine exactly what that percentage is. There are many articles on the interent that suggest that increase of hemorrhage may actually increase after surgery by having aggravated it. For those simple AVM's which are considered operable though, I know that the best option is total obliteration (man I love that word now), it is best to treat it. For those that are not, the percentage of hemorrhage is lower than what people think unless there are some physical structural attributes that increase the blood pressure such as one draining vein etc. The good news about such structures such as a single draining vein is most are operable.

3. When there is hope, it is easier to focus on what is important. What is important is family and friends with a high quality of life. I am not a Christian but I do believe there is a master plan. I told my family the same thing I tell my friends, and that is my heaven is living in this planet right now. I will enjoy every moment of it taking the good with the bad. So I say thank you lord for giving me this opportunity. With that said enjoy what you have in front of you.

Its a lot f mumble jumble, so sorry about that. I have saved some articles if anyone is interested. These are now so easy to find due to the internet.

Thanks so much for posting this! Our thoughts and prayers are with your daughter, you, and your family, your determination is amazing!
Marie & Steve

Thanks Tony, That was not mumble jumble at all - That was reallly informative. As for your daughter’s AVM, my heart does break for you but you are right that it is good news that there are multiple draining veins. I had not heard of a “diffuse AVM” before so I have learned something.

We will all hope and pray for future options for her. Never never give up hope for the future.
I’m sure you will have many moments of despair in the coming months and years but somehow you will pick yourself up and show your daughter how strong you are and you will get her thru this. We simply cannot be afraid of the future and you have the courage to get thru this. Thanks for taking the time to post that.