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Permalink Reply by Janice Brown (Andrew's Mom) on February 14, 2010 at 9:47am

Dr. Spetzler in Phoenix, AZ, he is not a pediatric neurosurgeon, but does many pediatric cases. The day of my sons first surgery he operated on a 4 month old with an AVM. My son is 13 (12 at the time of surgery). The day before he operated on a girl the same age as my son for CVM and a girl in her late teens for Chiari. I have heard from different sources he is the best in the country for brain malformations. It took two surgeries for my son, but we got an all clear and no deficits, so I have to agree with the majority. I know there are many great neurosurgeons out there, but look for the one with tons of brain malformation experience, specifically AVM. I was told by several neurosurgeons that was more important then the fact that they were pediatric. Read my sons story. His AVM was very complex, large and deep. The one thing in our favor was the location in the brain it was in deep in his left medial frontal lobe. Hope this helps and contact me for more info if you want.

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Permalink Reply by Larry on February 14, 2010 at 10:07am

Janice, Thanks for the information. Dr. Spetzler's bio indeed showed extensive research and publication. I am reading his website for more details.

I am so happy to hear that your child's operation was successful. Was it an open skull surgery?

-Larry

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Permalink Reply by Danyle on February 14, 2010 at 10:34am

Good to know! We are seeing him in a few weeks along with Dr. Bristol for my son.

Janice Brown (Andrew's Mom) said:

Dr. Spetzler in Phoenix, AZ, he is not a pediatric neurosurgeon, but does many pediatric cases. The day of my sons first surgery he operated on a 4 month old with an AVM. My son is 13 (12 at the time of surgery). The day before he operated on a girl the same age as my son for CVM and a girl in her late teens for Chiari. I have heard from different sources he is the best in the country for brain malformations. It took two surgeries for my son, but we got an all clear and no deficits, so I have to agree with the majority. I know there are many great neurosurgeons out there, but look for the one with tons of brain malformation experience, specifically AVM. I was told by several neurosurgeons that was more important then the fact that they were pediatric. Read my sons story. His AVM was very complex, large and deep. The one thing in our favor was the location in the brain it was in deep in his left medial frontal lobe. Hope this helps and contact me for more info if you want.

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Permalink Reply by Susan Troop (Lindsey's Mom) on February 14, 2010 at 4:55pm

My daughter didn't have her surgery with Dr. Spetzler, though I've heard wonderful things about him! We felt very comfortable with our local pediatric neurosurgeon and she did have open skull surgery to remove her AVM and I am still amazed at how quickly she recovered! I was very nervous about the whole thing, as would be expected, but she is back to normal with no deficits. Her AVM was also in her left frontal lobe. Kids are very resilient! We are still waiting to do another angiogram for the definitive "all clear," but you should be encouraged that there are many many kids on this site who have come through open skull surgery remarkably!

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Permalink Reply by Rebecca on February 14, 2010 at 9:46pm

Dr. Bill Thorell at the Nebraska Medical Center in Omaha. He's not a pediatric neurosurgeon, but he does specialize in vascular abnormalities. NMC has good facilities and staff. Omaha is a comfortable place to visit (despite the weather!). My daughter's AVM was successfully removed. She had some vision damage that was present before the surgery, a result of the bleed. I can't say we choose him - he met us in the ER the night my daughter had a massive bleed. But after the first couple days in the ICU, I did research and determined that we were in the right place and had the right doctor.

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Permalink Reply by Janice Brown (Andrew's Mom) on February 15, 2010 at 5:17pm

Yes, he had two open crainotomies. This was after 5 closed brain embolizations. His AVM was so large and deep that there was a small residual AVM left. He always said that he would error to the side of leaving some AVM, rather then risking damaging a good vessel. After six months the small, barely detectable AVM, had grown to 2 cm with new feeders so they did a second open brain crainy. Six months later after an angio it was confirmed there was no AVM. I was given the name of several drs. one in Atlanta, one in Chicago and Dr. Spetzler, but these drs. even though they were world renowed, also, did maybe 1-2 cases a month. Dr. Spetzler did 5 a week. Drs. are human and even the best can have failures. In the end you have go with whom you're comfortable with. I know what your going through. It's like I don't like any of my choices, don't make me do this. Feeling comfortable with the knowledge you've gathered and basing your decision based on this knowledge is all any of us can do. If I can help in any way please contact me again.

Larry said:

Janice, Thanks for the information. Dr. Spetzler's bio indeed showed extensive research and publication. I am reading his website for more details.

I am so happy to hear that your child's operation was successful. Was it an open skull surgery?

-Larry

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Permalink Reply by Jennifer (Jordan's Mom) on February 17, 2010 at 1:12am

My son was diagnosed with a right hemispheric avm at 2 weeks of age. At this point I am told he is the only child in the us with his quality of life. We were told it was not treatable. Dr. John Deveikes who is currently at the university of South Carolina (formerly at the University of Michigan) has performed 13 emboliztions on my son and he is now ten. Please contact me if you would like for his information. I know this can be a troubling time when my son was first diagnosed I couldn't find any information on this. My name is Jennifer and you can e-mail me at Jennifer_Johnson32@msn.com. I will check my e-mail to do what I can to help you and your family. Jordan has had 13 embolizations and the AVM shut itself down.

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Permalink Reply by Larry on February 17, 2010 at 11:39am

Thanks to all of you for the helpful hands! I am trying research and contact the doctors recommended by you. -Larry

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Permalink Reply by Ben Munoz on February 20, 2010 at 9:35pm

Hard to say who is the best, but I know Benjamin Carson is the most famous pediatric neurosurgeon. Cuba Gooding Jr played him in a movie.

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