First of all - my heart is with each and every one of you who has to deal with having or knowing someone who has an AVM. I am ever so grateful for the network and I hope that one day I will be of greater support to you.
Today, I would like to ask for your support and guidance.
Ella is our almost 5 year old baby with a bilaterial brain (thalamic, basal ganglia - deep brain)AVM. She has already suffered two bleeds with the latest one being the worst. The AVM rupture in Nov, 2015 led to hydrocephalus and thalamic hematoma. We were hospitalized for two weeks while the brain healed and then spent 5 weeks in inpatient rehab to address her right sided hemiparesis. We continue with rehab and she is making significant progress!
Now, we want to reach out to anyone and everyone who can provide some guidance about long term treatment plans for Ella. Given the size (large) and location (eloquent) neurosurgical intervention has been ruled out (for now). So, we turn to interventional neuroradiology and stereotactic radiosurgical approaches. I have a short list of doctors that I have reached out to but I was hoping that some of you might be able to point us in the right direction.
We live in northern Virginia, but of course, we would be willing to travel. I have contacted Dr. Monica Pearl (Johns Hopkins) and Alejandro Bernstein (NY) who should be providing their opinions in the next week or so.
If you know of anyone else who might be able to evaluate Ella's case, please respond to this discussion.
Thank you for your time and thoughts. We sincerely appreciate any recommendations you can provide.
I’m sorry to hear it, but glad Ella is making progress with rehab. It sounds like you’re on the right track with Dr. Pearl and Bernstein. Both are highly regarded, and Bernstein is a pediatric specialist.
It sounds like you’re getting educated, which is so important. Looking for experts with AVMs is the next step. Let’s see who the members come up with for recommendations. I wish you the best!
Hello BelleMunches, I am attaching my pediatric neurosurgeon from Dallas, TX in 1987. While Dr. Bruce may no longer operate, I am certain he has a wealth of knowledge and is very well connected/respected in the avm community. He was most recently in the D.C. area. Thoughts and prayers for Ella. GK
You have probably heard of Dr. Wayne Yakes- a physician who has made a career of treating difficult AVM's. He works out of Swedish Medical Center in Denver. He seems to work with alcohol and ethanol injections of AVM's more so than the other limited intervention options available to us.
Dr. Paul Rochon MD is a Radiologist who works at University of Colorado Medical Center and Colorado Children's Hospital- both in Aurora, CO (suburban Denver). My vascular specialist (Dr. Ashley Vavra MD) told me that Dr. Rochon is an Interventional Radiologist that has performed a significant number of coil insertions in AVM's of children.
I know Virginia is a long haul from Colorado. Closer to your home is a Dr. Rosen in New York who is often referenced by others on this website...
I’m sorry that you have to go through this. It is not easy. I recently read an article that Boston Children’s and Children’s Hospital of Philadelphia are rated the best hospitals in the US for children. I wish you an your family the best.
Thank you SO much for the information. I recently reached out to Yakes and sent him our daughters scans and reports today. I'll look into Rochon and Rosen as well.