Hi I am new to the site. My grandson, Ryan, 7 yrs old was diagnosed with an AVM 2 days ago. We have been told that surgery is NOT an option because although the AVM is small it is located to deep within the brain and adjacent to his brain stem. Our team of Dr's. here at Rainbow Babies & Children's Hospital in Cleveland, OH are recommending gamma knife. Are there any other moms out there who's child received this treatment? We are also going to contact Dr Spetzler in Phoenix and the Cleveland Clinic for opinions but the Dr's at Rainbow are very highly regarded ( in top 1% in the country). Any other recommendations? Thank you!
Hi Kk, I think you are doing the right thing by getting several different opinions. If your doctors are experts in AVMs, then having these multiple opinions to mull over is very helpful for you. You may also want to pose your question in Parents of children with avms for more perspective. Again, good on you for being such a loving grandparent. I know whatever you decide to do, Ryan will be getting the best care possible.
Debra's right. Here's the link to the parents of AVM group: http://www.avmsurvivors.org/group/parentsofavm. Once you join this group you may post a question there.And again, good for you for getting several opinions. Best wishes to you and your grandson.
Never, ever, never, give up! (I know you won't)
When my wife's AVM showed up in 1991, the first neurosurgeon told us it was un-operable. If the AVM bled (which would kill her anyway), he would operate as a last desperate attempt. IF (the big IF), he could save her life, she might be in a vegetative state or paralyzed. Nice options, huh?
We'll fast forward 10 years; we went to Stanford and she had several embolizations, surgery to correct an aneurysm that showed up after an embo, then radiation and finally microsurgery about 1998--The verdict: Her AVM is GONE!
I share this to let you know that medical technology is FAST. Your grandson's age is an advantage.
Best wishes.
ron, ks
You can't possibly know how much your comments mean to us. Ryan has a bleed and they are going to do an embolization tomorrow morning, if all goes well he will have his surgery Tues. morning. I was feeling defeated until I read what you wrote. I am sure I will never give up. Thank you from the bottom of my heart
The facilities and the doctors you mentioned are quite well known. As Ron mentioned…giving up is not an option. Please check out my friend Greg K’s profile…http://www.avmsurvivors.org/profile/GregKovach
He was only a young teenager when they discovered his AVM back in 1987. He had to wait for medical technology to catch up to him as well.
Just remember there are almost 5000 members on here. You are no longer alone. Oh and your Grandson is now on my prayer list!
Kk- so glad to hear this site is helpful to you. Good luck on your grandson’s embo tomorrow. Please update us when you can and never ever give up!!
Thank you Debra and Barbara. I'll keep posting.