I cannot recommend Dr. Matthew Brown or RIA based on my experience…read more
From the beginning, I made it very clear that I have an extensive family history of terminal cancer of all ages and I had already accumulated significant radiation exposure within the year following my pulmonary AVM diagnosis. I have lost multiple close family members to cancer, so every additional CT scan carries an enormous emotional burden for me, since just ONE CT scan raises your cancer risk. I repeatedly explained this and fiercely advocated for myself, but my concerns were never taken seriously. Instead, they were consistently dismissed.
My first pulmonary AVM embolization performed by Dr. Brown ultimately failed. I later learned that recanalization after embolization is relatively uncommon (less than 5%), and that failure led to additional testing, an additional radiation angiogram procedure, and another CT scan that would've been avoided had the initial treatment been successful.
The worst part came afterward. I requested a follow-up bubble study in lieu of a CT, which showed only a very small late right-to-left shunt--approximately 10 late bubbles. I read on my own that tiny shunts like that aren't treatable and carry no significant risk. I pleaded with Dr. Brown not to order another CT scan and asked that alternatives be considered because of my recent radiation history, given this was such a tiny shunt. Those concerns were ignored. Being told that "there's radiation everywhere" after expressing my fears about cumulative radiation exposure wasn't reassuring--it was dismissive. I was also told without the CT, he wouldn't provide me with medical clearance for future procedures.
After seeking a second opinion at Anschutz, I was told that, in my case, the final CT scan was not necessary. The physician reviewed published literature with me indicating that fewer than 30 late bubbles are not associated with any significant neurological risk. He also explained that my request of just a bubble study echocardiogram would have been more than sufficient, rather than another CT scan--an option that was never given to me despite my repeated concerns about radiation exposure. The physician at Anschutz also provided me with medical clearance for future procedures and said the bubble study was enough for that (when Dr. Brown said it wasn't and required the unnecessary CT).
Learning afterward that there was published evidence supporting a different approach left me wondering why that evidence was never discussed with me, or why Dr. Brown never read it, or even researched it before ordering another CT scan knowing I was so against it.
Now I live with the fear that I underwent additional radiation exposure that wasn't even necessary. No one can tell me whether it will ever affect my health, but I am the one who has to carry that uncertainty for the rest of my life. As the mother of three young children under five years old, that fear is overwhelming. I want to be here for them and watch them grow up.
This wasn't just simply disagreeing about a treatment plan--it was feeling that my concerns were dismissed rather than discussed. Shared decision-making means listening to patients, especially when they come prepared and ask informed questions. I don't think it's an unreasonable request of patients that current medical evidence and relevant studies be considered and kept up with by their physician. That was not my experience.
This experience permanently damaged my trust in Dr. Brown and RIA. I'm transferring all of my care to Anschutz, and I only wish I had done so before undergoing multiple angiograms and CT scans, including the ones deemed unnecessary.
If you have HHT, suspected HHT, or any type of arteriovenous malformation (AVM), I strongly encourage you to seek care at Anschutz instead of RIA. Anschutz will listen to you and your concerns. If you do stay with RIA, at least secure a second opinion before agreeing to repeated imaging or major treatment decisions. I wish I had trusted my instincts sooner.
Patients deserve physicians who listen, respect informed questions, stay current on pertinent medical literature, and practice genuine shared decision-making. Unfortunately, that was not my experience with Dr. Matthew Brown or RIA.
I deserved better. My children deserved better for their mom. Please continue advocating for yourself. Just because it didn't work for me, doesn't mean you should stop trying. They will have to hear us eventually.
-Samantha R
