I have a spinal AVM in the C7-T1 region with mild sensory symptoms which are slowly getting worse. My doctor in Canada recommended not getting surgery as the symptoms are mild but we got a second opinion from a more experienced doctor in Phoenix (Dr Lawton) and he recommended surgery. His rationale is to treat it before it gets worse. I am wondering if anyone has had this surgery and what was your experience. If you were a patient of Dr Lawton I would especially love to hear your experience. Thank you!
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I don’t know whether this message gets across .
I had a surgery done . Mine was thoracic . Not cervical
Was tough for four years . Then things improved .
If you want to ask specific questions , I can answer them based on my experience .
Pls send a message
And I will attempt to answer all your questions . As much as I know .
Best
Karthik
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Hi Rachel
Background - I am 59yo male. Had small symptoms begin 6 years ago. I was misdiagnosed with may ailments until 9 months ago when the Dr confirmed I had a spinal Dural AV fistula in my thoracic region - I believe it was T10. At that time my symptoms were severe. I used a walker to get around 50% of the time along with bladder control problems. My symptoms were accelerating.
I had four hour surgery in June - it was successful in terms removing the fistula. Recovery has been very slow and inconsistent - but - every week is slightly better than the last. I get around “almost” normal - and go to the gym 6 days a week. I can now jog short distances - and those distances increase each week. My MRI from a month ago looked very good in terms of the inflammation being much less than prior surgery. The only area not improving is the muscle tightness in my legs - which is bearable - but it gets worse when sitting for long periods and during sleep. But - that part is not getting worse. I would say my condition is now better than it was 18 months ago.
From reading the situations with others in this forum - outcomes vary widely. As mentioned - I was misdiagnosed for years - so - getting second opinions isimportant - and the Dr told me recovery is much more likely when the surgery is done early on - but that is for your Dr to advise.
best of luck and let me know if any questions.
Mike - Woodlands, TX
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Rachel I had a spinal AVM at T5 and ultimately surgery with Dr Lawton. If he is recommending surgery I would have him do it. He is considered one of if not the most knowledgeable person for brain and spinal AVMS. I wish you good luck!
Nancy m
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My daughter had a laminectomy in 5 levels of her cervical spine to remove an AVM last August. She started school on time 3 weeks later. It was no picnic but she is doing well now. Hers had bled into her brain last spring, which was how we found it. There was no question it needed to be removed to avoid a much worse bleed.
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Hi,
I also DAVF spinal surgery in 2022 , if u need surgery better earliest get it done as delay can cause later Issues in walk or spinal imbalance which can last very long or even permanent damage.
Best person to decide spine surgery is yourNeurologist or Surgeon. Take earliest guidance pls
Regards
Syed
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Hi Rachel,
I was misdiagnosed for at least 7 years before it became clear I had a sdavf at T6/T7, with all kinds of horrible and progressively debilitating symptoms along the way, all starting with sensory problems in my legs. I was 2 weeks off being in a wheelchair for good. I think my experience is very close to @tonmiletrader . I had no choice but to have the full laminectomy and disconnection surgery which took place 6 months ago. It’s been a long and hard 6 months and I have a lot of recovery still to happen but I’m hopeful I’ll get there over the next 12-18 months. I can now walk pretty well and getting stronger with more control, have less urinary accidents etc but wish I had been diagnosed early and had the surgery early.
No surgery should be taken lightly and I’m not a medical professional, but my two pennies worth, have the surgery. You’ll likely recover quicker, have better results, the sooner you do.
Let us know what you decide and how you get on.
Danny (London, M, 45 years of age)
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Get the surgery right away, i am crippled for life because of delay in my diagnosis and MRI,s. I was a cyclist and my legs and feet were going numb, and i was losing balance and muscle strength. My doctor thought it was arthritis , i told him no way. Long story short, they delayed 2 MRI’s for 2 months, They had to do a emergency operation to save my life, i was lucky to be alive. They used medical glue to stop my AVM, but my life is basically over since i was an avid cyclist and weightlifter. I have about 50% feeling left the waist down, i have leg drop, loss of muscles and power in my legs. My balance is horrible, and constant pain when standing. Never delay AVMs, the surgery was fine. The doctor said sorry, that he would get it right. Too late for that, and now he is retired.
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@bigd So so similar to many of us. It’s so hard to diagnose. @Rachel7 you may not think it yet, but you’re actually lucky to get the diagnosis early and with so few symptoms.
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My husband had a laminectomy in 2015. The surgery was a failure and left him a quadriplegic. Get as many opinions as you need and take a balanced approach.
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Hello Rachel,
Yes I have, While at home, I Had an aneurysm in my spine that burst at my T12 vertebrae. by surgery time my whole lower half of my body was numb, it was very traumatic with the pain , then numbness. When I left the hospital, my legs were very weak and I used a walker until i was able to move around better.I was diagnosed with an AVM. my lower half of my body was in extreme pain while arriving at the hospital. after 7 hours of not a whole lot done, I was transferred to UIC down town Chicago. the lower half of my body was going numb so they did some emergency surgery, found the Aneurysm. I had to have an laminectomy, After months of PT I did try to go back to work, I lasted 3 months and I couldn’t do it anymore , I’ve had three mor surgeries since then. I’m still in pain to this day from my bellybutton to my toes!. It’s something I’ll deal with indefinitely. But I am so grateful to be seen and alive!… for everyone out there who experiences this weird kind of injury/ incident, hang in there!.. and I wish you well!.. ..
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Hi Rachel
Relatively new here - I had a laminectomy for a T7 spinal fistula back in June. Symptoms had been steadily getting worse since appearing at start pf 2024. They found the fistula by chance after I attended hospital with urinary hesitancy, fearing cauda equina syndrome. I was also at the point where both legs were quite numb up to the knees, and mild saddle anaesthesia was just about kicking in. Woke up after surgery feeling 10 times worse, full on numbness everywhere below my waste and general weakness. Managed to leave hospital on my own two feet and initial physiotherapy seemed to really help build general strength back up. Like many others though, the general symptoms have been very erratic in the months since, and it can get quite demoralising to see weeks of progress wiped out seemingly by unknown triggers. Main cause of issues for me was the late development of bowel issues, which in hindsight had potentially been impacting me for a while without me putting 2 and 2 together. But overall, I was given every impression that if I hadn’t received this surgery, I would have eventually progressed to full on paraplegia and double incontinence
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Hi David,
Your query to me regarding flareup of numbness n other issues after a year of leminectomy or deep surgical removal of spinal DAVF t6-7 level , Answer is No but rather i had Much neuropathic pain and stiffness in lower limbs Esp my knees And toes And that i see could be main reason of unbalance in walk So i am still using cain for support when go outside.
What Dr n neurologist said Nerve pain you need to bear n manage since Nerve damage already occurs , although i think nerve damage did happen coz of Major Spinal surgery , Although at times nerves do regenerate itself but not if It gets more damage or cut.
Also since very start of surgery I develop Over active bladder n constipation which gets improve with time, Now oab is much resolved And for constipation i use stool softner when need.
I doubt full recovery to Normal but If anybody gets 60% or above recovery i guess its surely good luck n achievement .
Anyway I still thankful to God that I am mobile and able manage.
Regards
Syed
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Hi Rachel,
I have been battling my spinal AVM (T10) for about 15 years and still going strong and learning! I haven’t been here in a while but just happened to see your post. I have had 3 open surgeries and 2 laminectomy’s over the years and the last one I had was June 2024 by Dr. Lawton at Barrow. For me, my visit to Arizona and Dr. Lawton were life changing. Between angiogram and surgery I was able to see the Grand Canyon and glad I didn’t fall in 
highly recommend their 2nd opinion program which was the best $100 I have ever spent. I am in Maryland and chose Barrow over Johns Hopkins and never looked back. Having faced the same situation you’re in, I would hold Dr. Lawton’s opinion above all else. I too had concerns about the idea of them removing the outer part of my spine, but I honestly cannot tell it’s missing unless I look.
Take care and please let me know if I can help in any way!
Andrew
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