AVM Survivors Network

Where are the top AVM doctors for "spinal dural arteriovenous fistula?"

I had an MRI for low back pain. The diagnostic radiologist who graduated from a Caribbean med school, not a neuroradiologist, reported the image shows an incidental finding of "suggested abnormal flow voids surrounding the conus medullaris. MRI with contrast is recommended to confirm findings." But I had so much anxiety and problems with the doctor and the radiologist because of the way they treated me and the mistakes they made (for example the doctor embellished the reason for the study stating I fall down, can't walk, etc. which is completely false. Then they both colluded to try to get me to get the next test without telling me why! They both said it's better I don't know until they confirm it. I find this to be so disturbing, so I went to two other primary care doctors for advice and they were both interested in co-managing with me even though neither one of them had even heard of the medical problem before. Not one of the four doctors consulted even suggested I consult with a doctor who has experience with this. I find myself wanting to connect with the doctors and clients/patients who have a clue about this.
Does anyone know if AVM is synonymous with spinal dural arteriovenous fistula conus medullaris? I am willing to travel out of state. Where should I go where I can pay a doctor(s) to help me move forward with confidence and less stress? I live in MI and have Blue Cross Blue Shield PPO but am willing to pay some out of pocket if it means I can talk to a doctor who has actually heard of this. Please help. I will return the favor if/when the opportunity arises. Thank you.

Hi, I was told by many doctors that the top institutions are usually academics since they are constantly doing research. Such as in California, where I’m from, its UCSF, UCLA, UCSB. You may want to check with university medical centers in your state. Good luck to you.

The head of neurovascular surgery at Cedars Sinai repaired a complicated aneurysm for me. Dr. Michael Alexander. He is an expert of many vascular injuries. My experiences and surgical results are outstanding. From consultation to follow up, he and Cedars were wonderful to me. I owe them my life. Good luck with your health. I wish you the best.:slight_smile:

Thank you, Richard, for the input and support...

Thank you, grassrootsgirl, for the prompt response and support...

On this website there is a list of doctors. Perhaps you can start by contacting some of them for initial consultation or visiting the ones close to you.

In our case we did exactly what Richard suggested. We emailed many academic hospitals from around the world. We sent CD of imgeries and reports. At the end we decided to go to Paris, France.

Mayo Clinic

Dr. Ghaus Malik at Henry Ford West Bloomfield did my AVM removal.

If you’re willing to go to Canada, Toronto Western hospital is a leading facility.

My treatment was in Augsburg, Klinikum Augsburg. There is a great team of neuroradiologist and neurosurgeons, working together hand in hand. Best wishes !

I would definitely recommend Dr. Lawton at Barrow Neurological Institute in Phoenix, AZ. I travelled there from Wisconsin as they are the number one place for complicated Spinal AVMs. My AVM was also in my Conus and I had it removed 2 months ago.

Hi, I have a spinalDAVF & I had an excellent neurologist & vascular neurosurgeon at Mayo Clinic in Jacksonville, Fl.