It has been about 6 weeks since I had my AVM rupture for the SECOND time! It's caused more damage to my memory, speech and I've lost a good amount of vision in my right eye among other things. The Proton radiation treatment I received after the first bleed has not worked yet and I have been told by several doctors now that a third bleed is entirely possible. I am now seeing doctor Neil Martin at UCLA, who just informed me today that the radiation has shrunk the AVM to a size that is small enough that surgery is now a possibility, when before, it was too large. I am trying to be strong for my family, but I am absolutely terrified at what the outcome could be if I go ahead with the procedure. I am also worried that if I don't do the procedure that a third bleed would be devastating. I have a very small window of time to make up my mind because there is blood still surrounding the AVM which would give a sort of cushion and make the operation slightly less dangerous. I could really use some encouragement, advice, experience, anything would be greatly appreciated!
Hi Michael,
A very tough decision indeed! I think you are being realistic in your assessments: Another bleed is definitely not good. And surgery has its risks..............
My suggestion is to sit down, clear your mind, take a sheet of paper with two columns, "Pro" and "Con". Start filling it out.
One of the decisions is "Do I have complete faith in the DR who will be doing this? How many AVMs like mine has he treated? What is his/her best advice to me?"
With your time constraints, it might be tough to fit in a 2nd opinion from another facility.... All you can do is make the best decision for YOU based on your info. Once you decide, it will be the right decision for you.
Best wishes in your journey.
Ron, KS
Do not let fear make your decision here, Michael. There is risk either way. Reading other members' comments about Neil Martin may help reassure you: http://www.avmsurvivors.org/main/search/search?q=neil+martin
It is not our place to say "do the surgery," or "don't"; you are the only one who can make that decision. It's okay to ask Martin questions such as, "How confident are you that this surgery will be successful," "what side effects might I experience?," or "if this were your son, would you recommend the surgery?" And of course discuss everything with your wife. Whatever you decide, we will be rooting for you!
Hello Michael,I've got 5 AVMs.Two have ruptured and 3 that are in waiting.My first rupture was 23years and the 2nd was 13years ago.I really feel good for s CowGirl that's got 5 of those buggers in my brain.The doctors just don't understand why I do so well.My daughter had surgery for her AVM.Her's was near the brain stem.She lost her motor fuction.I'm able to drive,ride my horse & mule,cook(not burn the house down),do lite yard work.My brain is tried at the end of a day.I love my naps but LOL I'm getting older too.I really had to lay down some rules for me to live by so I can have those "Good Days".I might add I've never had surgery for my AVMs.It does worry me too if the next one that ruptues it might not be so good.We can only hope for the best.I wish you the best.Sylvia
Michael.I forgot to say I lost alot of my vision in my left eye when my first AVM ruptured.After some time some of my vision returned.I also had to learn to look at things with my vision lose.I drive.My doctor does test on me yearly so I'm good to drive tho.Things do get better with time.Hang in there.Sylvia
Get it embolized!!!
I had a consult with him yesterday and it went very well. He answered my questions very openly and honestly. He said that he was about 55-65% for doing the surgery. That number seems slightly low, but Im leaning more towards the surgery option because if it is successful I could walk away completely avm free which I never thought was possible...Still those odds make me nervous. Embolization was ruled out because of the location. That was my first option for sure. Thanks for your feedback!
This was my second opinion. I was seen at Loma Linda first and was treated with radiation, but the second bleed, they told me that I just had to wait for the radiation to obliterate the AVM. So i went to UCLA and Dr. Martin said that he was 55-65% in favor of doing the craniotomy. I wish those numbers were just a tad higher. Thanks for the reply!
Great attitude. I wish I wasn't such a pessimist! :)
If you want one more opinion, try Steinberg at Stanford, Lawton at UCSF, or Spetzler in AZ. See if anyone else gives you better odds.
Ask your doctors about embolization man!!! Its much less an invasive and a lot safer than surgery, its similar to an angiogram they just inject a glue into the blood vessels feeding your avm, thats how mine was treated almost two years ago, ive had no side effects, no second bleed, and no complications!
I was hoping to get it embolized, but the location makes it too dangerous I guess.
Oh man thats a bummer, stay strong dude, treat it the best way for you, I cant imagine two bleeds! I only had one particularly large bleed, i havent even walked in two years, just thinking if i had another one is terrifying! I was in a coma for six weeks from just one bleed! Stay strong dude you got this
Thanks for the encouragement man! I hope you're able to walk again soon!
Michael,
Dr. Martin is one of the best neurosurgeons, but if you want to get a second opinion I would get it from Dr. Spetzler in Arizona. Dr. Spetzler and Dr. Martin worked together a while back, they are the ones who created the Spetzler Martin scale. For your info Dr. Spetzler has a 48 hour turn around policy. If you send your films, he will review them and one of his doctors will call you back in 48 hours. The feedback will let you know your options. The you can decide.
Your decision to move forward with surgery is tough especially when it is an option.
I am in so cal too, I had two opinions local one said inoperable the second said operable. The I sent my films to Doctor Spetzler and 48 hours later I received a call that he could resect it. My decision was made up when he said it. 3 weeks later I had surgery and everything went well. I chose Dr. Spetzler because I felt he does them on a regular basis.
My prayers are with you
Carlos
Michael, I also had PBR but at Mass General. It took 2 years for the radiation to take my AVM away. You have a very hard chose to make. You will be in my thoughts and prayers. Stay Strong and Positive!
I’ve decided to go ahead with the surgery. It’s set for next Wednesday. I feel confident. I’m ready to get this thing out and move on. It’s been a long time coming. Where did you have your AVM? What part of the brain? Did you have many negative side effects? Thanks for the reply.
I’ve decided to go for the surgery. Thanks for the reply and keeping me in your thoughts! It’s set for next Wednesday!
We are all rooting for you, Michael. I hope you get the best possible outcome!
Michael I just had my GK on 9/30/13. Won’t know anything for awhile. Saying a prayer for you and your family!