What do we do? Please any suggestions?

My husband and I don’t know what to do at this point. We have a 2 year old who has had 2 craniotomies and now we are scheduled for an angiogram June 30th to make sure the last surgery was successful in getting the whole fistula. He has been having a seizure every month the past few months and he is now having micro seizures which lead up to a seizure that lasts 45 min. We were not getting anywhere with his neurologist so we found one in another town. We were in hopes the surgeons at the same facility would at least look at our case but they would not even speak with us. Now we have a neurologist that don’t won’t to treat him (feels all his doctors should be in one place) which makes since and a surgeon that can’t find the time to take care of his needs. Where do we turn? What are some options? What are the questions we should be asking and more important what are our rights? Why after 2 surgeries is he still having seizures? If we would have known about this group we would have realized things are not have a surgery and all is fixed.

I do not know what to suggest to you to get some medical group to speak with you. Typically, your local general doctor or neurologist is your first step to finding advanced treatment options. If you have a local DR, I think I'd speak with him/her to see if you can get some help.

It is not a given that if you have surgery, the seizures will stop. Both my wife (who had an AVM removed) and Son who had brain surgery for epilepsy (seizures, no AVM) still have to continue on anti-s meds or they might have seizures.

I have also read recently that AVM type things in children tend to "grow back" or show up again. That does not seem to be as prevalent in adults with AVM.

As parents, you make the best decisions you can at the time. Please don't feel guilty; you tried to do the best for your child, and you still are.

Best Wishes,

Ron, KS

Thank you! We have the best Pediatrician and she has stood with us the whole way.Keep in mind we are their first avm pts. She actually got us accepted at the 2nd facility, only to be treated as if we have a plague. It appears all the surgeons and neurologist feel we have the best surgeon or they are scared to go behind where there could have been mistakes. I always thought a pt should be given a 2nd opinion, I guess after they have been under the knife no one will touch them? Channing’s seizures last 45 mins without an intervention. We thought, had a seizure, fixed the problem, had another seizure take out the problem, now have 2 more seizures…I don’t understand. He had a seizure at the end of March the new facility done a ct scan, the radiologist’s findings were fluid around the brain, they paged his surgeon he said all normal? Im sorry for all the negativity just at my wits end today, baby has been having micro seizures all day.

It sounds like you need to be referred to someplace that regularly treats AVMs. I know there is a well known one in Georga, but I don't know it's name.

Ron, KS

Hi Anita. I hate to say it but not all doctors are created equal. It sounds like you need a neurologist who specializes in seizures. This is just my opinion but I find teaching university hospitals tend to attract the better doctors. I will be praying for you and your son!

If at all possible I would love to know the facility in Georgia his pediatrician said if he needs another surgery we will find somewhere that specializes in this. Thank you for your reply.




Ron, Kansas said:

It sounds like you need to be referred to someplace that regularly treats AVMs. I know there is a well known one in Georga, but I don’t know it’s name.

Ron, KS

We have been with a teaching hospital and it seems we are treated like cattle and never see same doctors. Thank you for your prayers we need them all




Barbara H. said:

Hi Anita. I hate to say it but not all doctors are created equal. It sounds like you need a neurologist who specializes in seizures. This is just my opinion but I find teaching university hospitals tend to attract the better doctors. I will be praying for you and your son!

Hi Anita. It’s a shame when you are not treated like a human being by one’s own doctor. Emory University Hospital in Atlanta has a wonderful epileptic specialist…his name is Dr. Meador. I have his number if you want it. My old surgeon is now head of Neurosurgery there and his name is Dr. Dan Barrow. I have also heard of a doctor in NYC who deals with small children and AVM problems. Has anyone recommended a 24 hour EEG on your son?

Anita,

I will start off by saying that you are doing your best and your son will recognize and thank you for that in the future.

I was treated by Dr Alejandro Berenstein in NYC. He and his team are amazing! Dr B (as everyone calls him,) is the director of Beth Israel's Hyman-Newman Institute for Neurology and Neurosurgery (INN) at Roosevelt hospital in New York City, a state-of-the-art facility for the diagnosis and treatment of neurological diseases. He created and developed the first Division of Interventional Neuroradiology (surgical neuroangiography) in the United States. I highly recommend him! A simple google search will give you endless information about him and how he has dedicated his life to treating neurological diseases, especially AVMs. Although he treats patients of all ages, he specializes in pediatrics. I am 19 years old, clinically still a child, and as such I stayed in the Pediatric ICU in St Luke's Roosevelt Hospital, a section completely set aside for Dr B's patients. It's amazing to see what he has done!

I wish you all the best, and health for your son.