My husband and I went to see Dr. Philip Meyers at Columbia Presbyterian University Hospital in New York on Thursday. When he evaluated me two years ago, he said my AVM was in operable and embolization wouldn’t do any good. He thought that unless it hemorhaged, I should leave the AVM alone.
Well, this time I arrived in a wheelchair with a severe headache. He says that operating is still out of the question because my AVM is so large and twisted into my brain tissue, that at the very least, I would be left paralyzed on the left side of my body.
However, he does think that my headache pain is caused from the rush of blood flowing into the AVM. He thinks he can embolize some of the vessels to ease my pain. I asked him about the risk of something going wrong…he said about 5%. That reminds me of you, Kelly…a 95% chance of feeling a little better definitely seems the way to go; but that 5% risk is scary as hell!
I know when we were dealing with all of the decisions and percentages, I had to keep reminding myself that there is risk involved with everything, even just getting out of bed. So, after much research and prayer, we went with our gut feeling and chose not to look back. In the end everything turned out great. That 5% chance (which is the same we were given) can kill ya’ if you look at it too long. I hate making decisions anyway, but treatment decisions really stink! I’m sure you will make the right choice 
Hope you get some relief soon!
Thank you, Susan. I am probably going to have it done. I have to get rid of this infection in my tooth and jawbone first.
Connie, Our stories sound very similar! I too, would have most likely ended up in a wheelchair had I not had my embos!(4) Also I had a shunt after my 1st embo. While, I realize that embolization is by no means a cure, or way to obliterate my avm, they have however virtually eliminated my headaches, and restored the left strength that was lost! Best of luck with ur upcoming embos, you will be in my prayers:) -GK
Thank you, Greg. I only need the wheelchair when I would otherwise be doing a lot of walking. My left foot drags some and that makes me walk crooked and a little off-balance. I also tire easily and sometimes feel dizzy when I’ve been walking for a while or shopping. I don’t need it in the house though.
If I recall correctly, we are also alike in that our AVMs have not ruptured and are inoperable.
Hi connie, Im happy that now finally they are willing to do something, after such a long time of saying not treatable miracles happen and God steps in and says lets do something to help his child,5% is still very scary ,any treatment is scary!!! but im happy if they can help get rid of some of that terrible pain and give you some help then thats terrific!! news,and the way to go,im sure what ever you decide to do in the end will be the rite thing,You know we always pray for you and you have such strong support here and your family and it seems you have great doctors ,im so happy for you !! let us know what your plans are…sending a huge hug your wayxxooo
I will, Susan! Thank you for the hug and prayers; they are really appreciated.
Well it sounds like that doctor is really looking at your symptoms and listening to you and trying to work with you on this. It will be a difficult decision for sure. I’m sure relief from some of your headache symptoms would be amazing for you. My thoughts are with you Connie.
Will be praying for you Connie. I think that 5% chance is worth it!
Connie, you are correct…We are both unruptured and inoperable. My neuroradiologist was extremely proud and pleased with the results of my 4 embos. During embo #3, he changed his initial plan and embolized some cranial vessels that also fed my avm, in hopes of relieving my chronic headaches…Well, it worked awesome! He was most pleased and almost surprised by these results, as I think embo’s are typically just a preventative blood loss procedure prior to surgery.(radio or crainiotomy) So my point being, I feel confident that while our avm’s may still be inoperable, our symptoms can be alleviated from embolizations:) Please keep us posted on ur progress! Prayers and best wishes:) -GK
Connie, I pray you will finally get some relieve. I hope you can get some help soon.
UPDATE - The embo is scheduled for July 7th. I can’t believe how quickly Dr. Myers got this set up after years of “just wait and see what happens”!