My 12 year old daughter Berkeley was diagnosed with a left frontal lobe AVM in August after having a seizure. There was no swelling or bleeding. Due to the location which was on her motor strip and the size, surgery was not recommended by any surgeons. We got opinions from physicians where we live in Florida as well as Mayo in Rochester and Johns Hopkins in Baltimore. They all determined LINAC surgery which is what Gamma Knife is a type. She is being treated by Dr. Lim and Dr. Ahn at Johns Hopkins and believe me, it has been worth all the traveling time. She had her procedure on December 2nd and the physicians and staff were fabulous with her. She is currently on Keppra and is doing great. She did not have gamma knife but the similar procedure that uses a mask instead of frame. I am a RN so I did a lot of research on my own into the procedure as well as the physicians. It all seemed scary to me and there is no procedure without risks. Do not be afraid to ask for another opinion, in fact Mayo and Johns Hopkins will give independent opinions without you being their patient. We are our childās best advocate! God bless you and your family as you make all the decisions for your child.
Thank you for your post. I totally agree with this, that āwe are our childās best advocateā. We did go to Mayo and got a 2nd opinion. We also looked into Gamma knife there. We decided to stay with Childrenās in Minneapolis. We are in the process of scheduling an embolization and surgery to follow. The embolization doctor said it looks like there is a 10-20% chance that he could get it all with embo and we may not need the resection. Obiously we are not ruling out the resection, as the success of the embo getting it all isnāt that high. We decided not to do Gamma due to the waiting period and the fact that his lesion is in a non eloquent part of the brain and fairly superficial. I hope all continues to go will with your daughter. Godās blessing to you too!
Melissa said:
My 12 year old daughter Berkeley was diagnosed with a left frontal lobe AVM in August after having a seizure. There was no swelling or bleeding. Due to the location which was on her motor strip and the size, surgery was not recommended by any surgeons. We got opinions from physicians where we live in Florida as well as Mayo in Rochester and Johns Hopkins in Baltimore. They all determined LINAC surgery which is what Gamma Knife is a type. She is being treated by Dr. Lim and Dr. Ahn at Johns Hopkins and believe me, it has been worth all the traveling time. She had her procedure on December 2nd and the physicians and staff were fabulous with her. She is currently on Keppra and is doing great. She did not have gamma knife but the similar procedure that uses a mask instead of frame. I am a RN so I did a lot of research on my own into the procedure as well as the physicians. It all seemed scary to me and there is no procedure without risks. Do not be afraid to ask for another opinion, in fact Mayo and Johns Hopkins will give independent opinions without you being their patient. We are our childās best advocate! God bless you and your family as you make all the decisions for your child.
Matt had his embolization today. It went well! They did discover that he has 4 feeder arteries instead of the one that they originally saw in the angiogram. They were able to block two of them with the onyx and the other two will be delt with during his surgery on Wednesday. He is doing very well. The first thing he asked for when he was fully awake was a double cheese burger from McDonaldās. He ate the whole meal no problemo. I was so happy to see him awake and talking and feeling good, no pains or headaches from the embo. Thank God!
Glad to hear that the embo went well! We will be looking forward to hearing good news from the surgery as well! Please keep us posted. Our prayers are with you!
Rachel Dufault said:
Matt had his embolization today. It went well! They did discover that he has 4 feeder arteries instead of the one that they originally saw in the angiogram. They were able to block two of them with the onyx and the other two will be delt with during his surgery on Wednesday. He is doing very well. The first thing he asked for when he was fully awake was a double cheese burger from McDonald's. He ate the whole meal no problemo. I was so happy to see him awake and talking and feeling good, no pains or headaches from the embo. Thank God!
I know this is an old thread, but I wants to thank Rachel for starting it. I am scheduled for a craniotomy tomorrow, and while I had already made the decision to get it done, reading this thread helped me feel more secure in my decision.
I am at the Mayo clinic right now, had an angiogram on Tuesday to verify the location of the AVM (frontal left lobe, near parts of the brain that support Personality and Short Term Memory). I had an angiogram at the University of Iowa, where the initial recommendation was strongly for surgical resection. I was thrown for a loop yesterday when my neurosurgeon at Mayo suggested (after seeing the angiogram) that perhaps gamma knife would be the better treatment option.
Iāve spoken with both Dr. Lanzino (my neurosurgeon) and Dr. Pollock, the resident radio surgeon. My parents gave them both the āif it were your kidā question, and both answered Gamma Knife. However, Iām not the kind of person who likes to wait around to find out if something worked; when somethingās wrong, I want to fix it immediately. Impatience I guess, personality flaw. 
However, success rate is about the same for both: 90%+ for surgery, 85% for gamma knife. I know surgery is going to be a much bigger pain recovery-wise. But that extra assurance is worth it to me, as is not having to come back for a possible second round of Gamma.
I know I am extremely lucky to have the choice, and more so that my AVM is not in a terrible position nor terribly big, but I just wanted to chime in for anyone else who finds this thread and is weighing options. I will try to update this thread after the surgery. Hoping for success! Tomorrow is going to be an eeearly morning.
Best wishes for a successful surgery tomorrow, Chris. Keep us posted.
Hi Chirs,
First of all, I am so sorry that you have to go through this and have to make these kinds of hard decisions. My son actually had his AVM in the same area. I will be praying for you tomorrow that your surgery goes well, that God is with your docs and you. I pray you will recover quickly with no complications! My son was feeling much better after the first week of surgery. He was discharged from the hospital after 5 days. They actually did an embolization first and 2 days later did the resection.
He went back to being an active teenager less than 2 months after his surgery. This was about a year and a half ago. He is still going in for angiograms to check on the area. There is still a small malformation in the area, but there isn't much blood flowing. The Dr. says it is regressing or shrinking. We are supposed to have another angio in 2 years. He continues to be symptom free and enjoy his active life. Thank God. Let us know how your surgery goes. Blessing!
Thank you for your kind words, Rachael. I am happy to report a successful operation!
Unfortunately Iāve been racked with a few seizures this past weekend (AGAIN), so Iām at my local hospital under observation to ensure everythingās okay. Weāll see!
HI Chris,
I hope everything is okay. Have they done any MRIs to see what is going on in there?
Did they end up doing an embolization before the crainiotomy? I am glad your surgery went well! Hopefully it is a short term side effect. I'll keep you in my prayers. Hang in there, I'm sure everything will be okay.
My neurosurgeon didnāt perceive embolization as necessary, so I has a straight resection of my AVM. Iāve had a couple CT scans and an angiogram since the removal, and all have shown positive signs. I think the empty space in my head and the too-quick step down of steroids is what may have caused the additional seizures. None so far this weekend!m
Good news that you had a good weekend. They had my son on Keppra for 6 months after his surgery just to make sure he didn't have seizures, then they weaned him off of it. Are you on any anti seizure medications? Maybe that would help. Keep resting and healing!!!
How are you doing Chris?
I'm doing fine Dandelion, at least, as good as I could have expected. I still have memory problems which I'm hoping will lessen after I'm taken off my Keppra, but we'll just have to see.
Hi thereā¦I know it has been awhile, but can you tell me how old your daughter was? Our 16 yo son just diagnosed and we are leaning toward the surgery, but I am scared of the recovery. His is in the frontal lobe and 2.8 cm. Thank you!
Hi thereā¦I know it has been awhile, but can you tell me how old your daughter was? Our 16 yo son just diagnosed and we are leaning toward the surgery, but I am scared of the recovery. His is in the frontal lobe and 2.8 cm. Thank you!
Hi jasonlisa1837ā¦Sorry I didnāt get back to you sooner. My son was 13 when he had his first surgery. His was in the left frontal lobe and close to 3cm. His AVM grew back and at 19 Years old he had his 2nd resection(brain surgery). For his AVM I think we did the right thing with surgery. His surgery was last May and his surgeon was confident he got it all. We went to Barrow Neurological Institute in Phoenix AZ and we were blessed to have Dr. Spetzler perform the surgery. He will have a 1 year check up this may. We are praying for no AVM. I know this is a very scary thing. Please let me know if you have any questions. Praying for your son.