First time posting here. Sorry to all those who have or are experiencing the symptoms of their spinal AVM and recovery.
I have to make a decision on surgery vs embolization in the coming week or two. Hoping to find people willing to offer their advice before then or even after so others can learn from this thread.
My brief story: 30 year old male. Chronic back pain on and off for 10+ years worsening this last year and then becoming debilitating and nonfunctioning for 6 months until a spinal AVM was identified on thoracic MRI. Officially diagnosed with spinal angiogram (Februrary 2026) and now just received several second opinions on best treatment options. Also an MD/PhD student who is still finding it difficult to find great evidence and literature on the topic and seems like patient experience might be the best tool for me.
My anatomy: T10/T11 Spinal AVM. My AVM ball (nidus) is posterior to the cord, perimedullary (on surface of cord) with some intramedullary component (venous congestion ascending within the cord). I have one major arterial feeder that is a candidate for embolization and two minor feeders which are not.
I would love to hear people’s decision making process on embolization vs surgery. I have seen 3 different neurosurgeons and their opinions are summarized as followed:
Barrow Institute: Surgery. Embolization tends to add unnecessary risk and often they recur. Embolization also can make surgery harder.
Mayo Clinic: really hard decision. Both are suitable options and it is a hard one to make.
UIC: Embolize. Surgery too risky and the spinal cord will be injured.
My biggest concern is pain. Obviously, I don’t want to be paralyzed or have bowel/bladder issues but I have been living non-functional for so long that I need to know there is an end to the pain.
Thank you all for considering responding to this. Anything would be appreciated.
Drew I have an AvM on T5. Like you I experienced debilitating pain and loss of function in legs arms and hands. The drs in Tucson didn’t feel it was active as there was no edema on my spinal cord. After two failed attempts at embolization I continued to spiral. I got referred to Barrows and Dr. Lawton who had assured me all of my symptoms were due to the AVM. I had surgery 10 days later. All this happened during Covid lockdown and I was 69 at the time. I’m now 75 and a female by the way. It was a long hard recovery but if it were me I would do the surgery. You are young and hopefully will have an easier recovery. One thing I did that was very helpful was weekly acupuncture treatments. I believe they greatly helped stimulate blood flow and nerve recovery.
I wish you well in whatever you decide!
Nancy M
Hi DrewB,
I had spinal DAVF symptomatic n detected within some 6 months before Major surgery in Toronto western Hospital in March-2022.
My best advice, dont decide yourself rather leave decision to your Neurologist And neuro Surgeon. They are the best to decide Not You.
And What is your current status, r u able to walk n do routines or not .
Neuro surgery is not much big deal Now adays so i guess And post surgical Rehab quite good as well.
Hey Drew, I hope what I share is helpful to you. I had a spinal dural arteriovenous fistula located at the L1/L2. I had symptoms for about a year, prior to going completely numb and paralyzed below the umbilicus. After that, I opted for embolization. I am one year out and recovering. I can walk on a cane. I am pain-free. So far, I have no regrets about doing an embolization. My advice is that if you have a good neurosurgeon and a very clear MRA image, you should be able to have it embolized. I had this procedure done in El Paso, Texas. You are welcome to message me if you need any further advice or help
59yo male. I had been misdiagnosed for 5 years before a new neurologist confirmed it was a thoracic SDAVF. I was using a walker 1/2 the time, couldn’t walk up a flight of stairs - and bladder problems and ED. I had the surgery last June.
Since then - a slow and uneven recovery - but - things are still improving. I was off the walker completely after two months. I can walk unlimited distances and stand as long as needed. I was able to jog a 1/4 mile last week. Leg strength has returned at maybe 75%. Leg mobility is “fair”. ED and bladder issues mostly better. Only major issue being muscle tightness in my legs - notably when I am in same position for more than a few minutes. Still have numbness in the saddle area.
I had an MRI six months after the surgery and Dr said it looked as good as I can expect - and encouraged me to keep pushing myself at the gym and other activities “whatever your body is okay with” - so I am very active at the gym five days a week. Weights, cardio and cross fit.
Hi Nancy,
Can you eleborate how long you conitnue Acupunture once weekly snd share some details on improvement.
Just a bit curious as I just started acupuncture in lower lombs 2 weeks back, thiugh feel some difference but still not sure
Regards
Syed
I did it weekly for a year. For me I believe it helped a lot. I then did it every other week for about six months. I bought a massaging mattress that helped to relax me and ease the tension which comes with the pain. My dogs love it!
It seems every option works differently for each of us. I had no success with injections and they do wonders for others. I suggest try everything that is available for relief.
I wish you all the best!
Nancy