Thank you so much for this website and the discussion forum, thank you so much to the members who has very good knowledge on various topics related to AVM.
My daughter had subarachnoid hemorrhage on 3/23, she was in hospital for 3 days in Lurie Children hospital in Chicago, at that time they could not find the source of bleeding in the brain.
Later follow-up MRI scan of spine on 5/13/2016 showed a AVM on the spine at C7. it was confirmed by follow-up angiogram. Right now doctors (dr Tadanori Tomita - neurosurgeon, Dr Ali Shaibani (IR) at Lurie Children are coming up with a treatment plan for her.
I need your help in finding the best surgeons , Interventional Neuroradiologists for spinal AVM to get second opinions and also possible treatment. We are ready to travel to get best possible treatment for her and also hopeful cure from this.
Can you please suggest 5 doctors (places) I should send the records for second opinion, please suggest how to reach their offices directly.
Dr. Egon Doppenberg with Advocate Health Systems (Chicago based) is fantastic. Excellent dr and performed my surgery 3 years ago (he was w/ NorthShore at the time). Top Notch. Also Dr. Julian Bailes at Northshore Health Systems. Both local. I am so sorry you are facing this.
Dear Dad, I know this is scary for you and for your little girl,too.What can be done today is quite amazing.
I am alive today because my doctors did amazing work four years ago and saved my life.They had no idea what it was!Today I am back to my old self pretty much, so I know your little darling is going to be just fine, too!
My doctor was Kirk W. Jobe, 603 7th St S #540, St. Petersburg, FL 33701 Phone:(727) ■■■■■■■■. I am certain that they have really capable physicians where you are.All the best wishes are being sent your way. Keep us posted!
I am sorry to hear your daughter's spinal avm. I highly recommend Dr. Spetzler at the Barrow Neurological Institute in Pheonix, as already suggested by Tina. Spinal AVM is very rare and very complex by default. When I was at Barrow for my son's surgery, I learned that people from over the world travelled there. They treated spinal AVM "routinely", and have a room with extra space for parents (for out of state patients). It is not only Dr. Spetzler, but the entire team, Dr. McDougall, the nurses, rehab team, everyone at BNI, also the latest equipments that make it a world renowned place especially for spinal AVM. I called their office and they sent me an email with the list of things I need to send them (eg. any images taken, brief summary, $100 consultation fee etc).
Thank you so much Momspinalavm. I have sent the records to Dr Spetzler office, to Dr. Gary Steinberg at Stanford and to Dr Rafael Tamargo at Johns Hospkins. I hope that one of them will accept to do the surgery on her.
My Daughter's AVM is similar to your son's. It is 9mm AVM with small component of aneurysm. Currently she has minor symptoms (minor left hand pain which comes and goes), otherwise she is normal.
Another question I have is can she travel by air from Chicago to Pheonix, AZ? will there be a risk for bleeding?. I am very worried about another bleeding, so I am rushing things to have the surgery as soon as possible.
How is your son doing? Is he completely back to normal? My best wishes to him.
We got a call from Dr Spetzler's office. Dr Spetzler is accepted to do surgery for my daughter.
One question I have is Dr Cameron McDougall who normally does the embolization at Barrow for Spinal AVM is no longer working at Barrow Neurological Institute. I was told that DR Felipe Albuquerque will do the embolization for my daughter.
Do any of you know anything about Dr Felipe? Is he as good as Dr McDougall? Does Dr Felipe has lot of experience in doing embolizations for spinal AVMs.
I am little worried about DR McDougall not doing the embolization for my daughter.