I am looking into particle embolization as a possible less risky treatment for my son who has a 2.3cm cervical spinal AVM at C3-C4.
I would be very interested to hear any stories and experience of having this treatment: who performed it, was it successful, how many treatments have you had/will need and if you continued to experience any previous symptoms like pain, tingling and weakness after you had the treatment. I approached Professor Houdart in Paris and he said that particle embolization is less risky than conventional glue embolization and would likely be the best option but the downside is that multiple treatments 18 months apart are required.
Has anyone gone to France and had Prof. Houdart perform this treatment or by anyone else in France or the UK? I believe Dr Maneesh Patel at Charing Cross Hospital, London may also offer this treatment and he trained with Prof. Houdart.
I had an embolization procedure done at the U of A hospital in Edmonton, Canada last July 2023 for a cervical spinal avf (ran from base of skull to C8). Ended up with 14 platinum coils in my right vertebral artery to shut down the avf. So far so good…long slow recovery but getting stronger by the month. In a lot of ways I’m doing better than before…I am able to run again which was something I really struggled with before. I was supposed to have two procedures done to shut down the avf…but it ended up all being done in one procedure which made it very risky but thankfully everything worked out amazingly…stayed in hospital for 4 days. Regained feeling in my hands and feet and full function of my legs and arms. Immediately after the procedure I lost the use of my right arm/shoulder for a few months but it gradually came back. Still weak on right side (arm/shoulder)…physio therapist said it would be at least a two years or so before I regain full strength. I have a bit of numbness on my left knee after the embolization but it does not compromise movement or strength. Faith, prayers and support from family got me through…was the hardest experience of my life. Hope the best for your son.
Hello. I think I was actually one of the early adopters so to speak of the particle embolization. I have an AVM on my C1 and C2. It is a very “elegant” AVM (I have a couple other words I’ve used to describe it) that is intertwined with my spinal cord and certainly as it sits at the base of my brain puts my brain at risk as well.
My AVM was discovered when I was 17 years old in 1990 when I basically sudden onset paralysis as a result of the AVM putting pressure on my spinal cord. after weeks in the hospital stabilizing my condition, doctors consulted with experts around the world and nation, and proposed that a particle embolization be performed. I didn’t get great odds. 50% chance it might make me better and restore movement. 50% Chance it might make me worse – or at least that’s what I remember when being asked at 17 to make the decision. I chose to go ahead with the procedure. It was so risky that I had to lay awake on the table, listening as a threaded the catheter up through my artery from my leg into my neck and trying to squeeze that big catheter into veins that were just small enough to protect some of the aneurysms that had developed on my AVM. The procedure was successful. It was done again at age 24 and unfortunately complications resulted in what was called Brown Sequard syndrome and has created many challenges that I have had to live with over the last 30 years. That said, I lived. I am a walking miracle and I thank Dr. Tubmann at Abbott Northwestern Hospital in the Twin Cities (Minnesota, US) and his colleagues for saving my life with a particle embolization procedure twice. I would have been terrified to do the glue procedure as the consequences of that going up or down the wrong vein was too much for me to even contemplate.
In 2020, my AVM created a brain hemorrhage. Once again I survived but not without additional consequences to my mobility…and perhaps my brain. doctors did not do any kind of intervention as the bleed caused its damage in seconds. I spent over 30 days in the ICU mitigating the consequences of that bleed. I feel very lucky to be alive… as a note, I recently completed radiation therapy to try to reduce the footprint of my AVM. To date, that has not yielded any results but I’m just satisfied there were no negative results of undergoing that procedure.
I would be more than happy to talk about my experiences as you make decisions regarding your son. Please let me know and I’d be happy to provide a way we can connect in real time. My hopes and prayers are with you and your son. ERICA.