Hi everyone! I have been reading all of your stories for a while, but finally decided it was time to join. We found out today that the results of my 10 year old daughter’s angiogram show that surgery would be risky, since her AVM is located very close to a different artery (not connected to, just close) that if compromised would cause her to lose function of her right leg. Therefore he has pulled surgery off the table as an option at the moment and has recommended Gamma Knife instead. However, there are no locations for that in Knoxville, TN. We will have to travel to another city. Our doctor has suggested St. Louis or Indianapolis, but was wondering if any of you parents out there have had any good experiences or recommendations to share. I must say, this is quite a journey.
Hi Susan, My daughter had her Gamma Knife in Indianapolis. She first had embolizations at Methodist. Her Gamma Knife’s were done at Indiana University Hospital. She had 2. They took very good care of her plus the Gammas were successful. She recovered 1 night at Riley Children’s hospital,which is just a tunnel walk away from the cancer center. Riley knows how to take excellent care of kids ! So, I recommend Indianapolis. Our experience was very good. Feel free to ask me any questions.
P.S. The gamma knife is located in the cancer center at IU hospital ,that’s why I mentioned it.
So it sounds like it went well for your daughter. Did she have any side effects? Did she have to stay inactive for a while? I am trying to wrap my head around this thing. We were fairily certain that she would have surgery, but the results of the arteriogram have taken that off the table. I was really hoping that they could just take it out and be done with it. The waiting period after gamma is not to appealing to me, while the less invasive nature of it is. Hope we can get good results as it sounds like you did.
After the bleed she had weakness in her right leg and arm. It did get worse after the first gamma .I’m not sure if it was because of that or not.6 months after the GK she had swelling in her brain. Her doctor said it was because the AVM was shrinking. The surgery took 13.5 hours. Of course they did an MRI and angoigram first. Her 2nd one went smooth, no swelling and no worsening of her arm and leg.She was able to get up and walk around about an hour after all that. She wasnt allowed to go to school the next day. But after that she was back at her routine. She still has right leg weakness,she limps and she has barely any use of her right hand but I think the bleed itself was the cause of that.
As for the swelling, she was able to take oral decadron and stay home. But she was out of school for a month.
Thanks for the info. It is so helpful to hear from others who have been through it already. Hopefully the gamma will do its job without the negatives. We will be waiting for the next two weeks to hear back from the doctors at Indianapolis and St. Louis to see what their opinion is. I’ll let you know when I hear.
Precision Radio Therapy, Westchester, OH (My surgeons)
Mayfield Clinic, Cincinnati, OH (Where I get my radio, and is also another part of Mayfield)
These two locations are 20 minutes away from each other, and are associated.