Hello! New to the survivor group. I am a 28 year old male from NJ who about 3 weeks ago suffered a spinal cord AVM rupture in C4/C5 intramedullary. Long story short, I had extreme radiating pain in my right arm, followed by immense pain and pressure in my neck. As the night went on at the hospital, I lost complete sensation/movement on my right side, and eventually all extremities, as well as loss in bladder/bowel function. 2 days later, an angiogram was done where the AVM was partially embolized, but it is still active. I regained movement and feeling in all four extremities with a little residual minimal weakness in the right arm. Has anyone else had a cervical spine AVM? If so what was the treatment? Since it was partially embolized, they do not know if rembolization would be benefical and I am also told that radiation might to risky/ not work. Any suggestions would be appreciated.
Yes - my daughter, slightly lower than yours. She had hers surgically removed at Johns Hopkins in Baltimore.
Hi Mike, I have a C7/T1 spinal AVM. It has not bled yet so my symptoms are mild - lots of tingling and mild pain that comes and goes with some minor weakness in the left hand. Since mine is intramedullary it is very difficult to treat. I have consulted 3 doctors and received 3 different opinions (surgery/no surgery too risky/embolization and then partial surgery or radiosurgery). I am still deciding which treatment if any to pursue as they all have their risks.
Hello,
I have a 9-year-old daughter who was a very energetic child and a gymnastics athlete. She was suddenly diagnosed with a spinal cord arteriovenous malformation (AVM) and underwent an embolization procedure. Unfortunately, complications occurred by the doctors during the procedure, and the main artery was permanently damaged and blocked without successfully treating her AVM.
As a result, she is now unable to walk normally and has become very weak. Spinal cord AVMs are extremely complex and challenging conditions, and I truly understand how difficult this situation is for you, as I am living through it every day with my daughter.
What I can say is: do not lose hope. At the same time, proceed carefully and thoughtfully. I strongly recommend reaching out to the Barrow Neurological Institute in Arizona, as they are among the leading specialists in AVM treatment. Even if your insurance does not cover it, you may be able to obtain a second opinion for approximately $100–$200 out of pocket. Their guidance could be very helpful.
I sincerely wish you a full recovery. Please take your time, think about 10 times and carefully consider your next steps, as I have learned through a very difficult personal experience.
Regards
Safay
Who was the Dr if you don’t mind my asking?
Dr Michael Lawton at Barrows. He did my surgery on T-5 and he is amazing! I wish you good luck!
My daughter was 14, so some of the team were pediatric specialists, but I believe at least one of the team members also works with adults: Dr. Alan Cohen, Dr. Rafael Tomargo, and Dr. Vincent Shieh.
Hi Mike ,Sorry to hear your story, hang in there, keep your hopes up there is a number of good Doctors in the Northeast. My wife has an active AVM at C6 C7 and has had it a very long time.it started 40 years ago ,it currently has grown into the those vertebrae. But we are very active and go a lot of places and live our lives and pray for many more good years. there is a Dr.Robert Rosenwasser in Philadelphia that headed the department for a long time I think he is still working, I chatted with him just last year and I think a couple people on this site had surgery through him. We also live in NJ so if you want to reach out through email to chat let me know. Best to you.
Ken
Hello, welcome!
I’m truly sorry for what you’ve been through. I also have a cervical spinal AVM (C3–C7). I’ve been living with this condition since childhood and have gone through many bleedings and surgeries (around 15 in total). I lost sensation on my right side and had to relearn many things like writing and walking with my left hand.
Despite everything, I’m still standing with the support of my family and my faith. Alhamdulillah, I keep fighting.
I understand how difficult and scary this journey is. I hope you recover your health as soon as possible. (I shared my full story in detail on my profile.)
Hello!
I had a C2-C3 AVM which was found when I was 25, I’m from New Zealand and was told by every neurosurgery center/specialist in my country that it was too risky/complex to operate or embolize. I sent all of my information through Barrow’s second opinion and then successfully had my AVM completely removed by Dr Michael Lawton. I would 100% recommend getting a second opinion from him. He was absolutely incredible! It can be so unbelievably scary getting such a diagnosis and I found this page super helpful to be able to talk to other people who are going through similar health journeys. Happy to answer any other questions/provide support in any way 
I’ve seen his name a lot. If you don’t mind my asking- what procedure was done?
I was booked in for an embolization and then a resection (removal). They ended up calling off the embolisation because when they went in it was looking too risky due to the layout of the vessels etc. Went for the resection two days later and they successfully removed the entire thing. I had some weakness/sensory changes after the surgery but that was to be expected and after a few weeks in their neuro rehab unit was good to go home! Definitely worth getting his thoughts on if a full removal of your AVM would be a good idea/safe.
Was your surgery At Barrows this March? I’m scheduled for surgery next month there.
No , Sorry, we live in the Philadelphia area and outside an anagram imaging and cervical fusion 2 years ago ( that has straitened and supported that area) my wife’s AVM C-5/C-6 has grown into those vertebrae and no future surgery can be done’ she’s actually has recovered from that surgery quite well and is pretty much back to her independent self and been doing very well that surgery was done at Penn Medicine. This AVM developed when she was 15 . She is now 58 and still having many good days that come with some bad days and we pray for many more good days and fun adventures. I wish you the best and pray all goes well for you with your procedures keep your hopes up.
Ken
Hi I have a cervical AVM C1-C4 I’ve had it for over 25 years . It’s at the point now where I’m really in extreme pain and deteriorating badly. It’s just too risky to operate, only late last year a team looked at trying to come up with a way to fix some of my AVM but it has now cut off blood supply to two veins in my neck.
I now get severe electric shocks all the time down my left arm and my left arm and hand are basically useless. I have no feeling in my right leg up to my hip. My skin cannot repair itself when I get hurt, it also just tears. I hear the AVM ringing in my ears. It affects my bladder, my walking. I have focal seizures. The list is endless. But the pain in my neck arm and the headaches are so intense it makes me cry, and I have an extremely high pain tolerance.
I’m 52 so I’ve had a great run but just wanted to know if this doctor treated anything like this and how? It’s anyone else going through anything like I’m going through because I feel so alone.
Hi @sunnysue
You’ve got a lot going on! I’d just like to welcome you and say that as well as this conversation, and the symptoms that you describe that are similar to what the other spinal patients experience, we have a Pulmonary Heart & HHT area where you’ll find a few people with the same issues with skin trouble. I can see you’ve also found the other conversation with Stephanie and there’s obviously some commonality to Stephanie, Nico and even TJ.
It’s great that you found us. I hope the various team members can help you a little along the way.
I’ll add you to a couple more groups.
Welcome to AVM Survivors!
Richard