I have had my AVM since 2008 & I have had Gamma Knife & embolization. They say it is pretty much gone, but now I am having swelling & its been about 3 years now. Nothing my doctors have done has kept it down for more than a couple of months. I have been off & on steroids for 3 years & am still on them.
I have started Avastin( a type of Chemo)& they hope that will decrease the swelling, but we are picking at straws. My question… Has anyone used a cancer-based product to reduce swelling or had these problems?
You are right; it’s not exactly chemo. A doctor at UT Southwestern (Dallas) decided we might want to try this. Dr. Whitworth is his name. I’ve not heard of many people they have done this for, so I hope it works! ( actually, only 2 people at UT)
My núero-opthamaligst said their office uses it for different things & he really thinks it could work. Let’s see! :-S
Please continue to report on your experience with Avastin here, Kimberly. If you run a search on Avastin using the search box in the upper right corner, you will see that we have had many discussions about this medication but no actual reports on people's experiences, so you can be of help to us here. I hope it works for you!
Just letting you guys know, I have stopped the Avastin treatments for now. I had 8 rounds of them & went in for a routine MRI & what I thought would be a normal treatment, but the doctor came in, he informed me that I had a “slight bleed” & wouldn’t get to continue the treatments for now.
I go back for another MRI in October to see how things look for the possibility of starting treatments again. (I don’t think I will no matter)
Also, I have been looking for a new doctor, someone that could possibly give me some insight or a new outlook on things. I need something different. Does anyone have any ideas?
Thank you so much for updating us, Kimberly. I am sorry about the bleed. To ask about new approaches for handling symptoms from gamma knife, you might try opening a discussion on the radiosurgery group (click on "Groups" at the top of the page to find it). Perhaps hyperbaric oxygen might be helpful -- I'm not sure. For doctor recommendations, try the Southwest and MidWest groups.
Hey Kim. My 5 year old son, Connor, had 1 big dose of Avastin last fall. I don't know if it was related or not, but he had a stroke not long after that dose. I think I recall that Avastin had some potential dangerous side effects and we were so nervous about using it, but it was the last hope for Connor. One month after his stroke, he had a brain hemorrhage that ended his life in January of this year. It devastated our family. His case was very rare though. He had a dural av fistula and had 15 brain embolizations. He always did really well while on steroids, but as soon as the dr. stopped them, he would go downhill again. Steroids were the miracle drug, but the dr. would never let him stay on them long.
I still think about you and Connor all the time, Kim. I hope your family is doing okay.
Aww, thanks. This month has been super hard, as Connor would have turned 6. We just miss him terribly. He suffered so much and endured so much during the last 2 years and I'm glad that he's not suffering anymore. Still, it's a tough journey. Our family attended a grief camp this summer and that was a big help to our other children.
At least I didn’t have have many side-effects from the bleed & I will look into the others places. Thank you for that. Kim, I am SOO sorry to hear about your son; I know how hard this this has been, so I can only imagine what he went through; he was a trooper. Embolization, Avastin, steroids, ect… I must say, he is better now, though. 