Hi. My name is John. I live in Northern California. About a year ago I noticed numbness in my feet and burning in my legs and hips when I bent. Over the next couple months the symptoms got worse adding leg weakness and balance issues. My primary doctor ordered some blood tests and a lower back MRI (suspecting spinal stenosis). When this came up negative, I was referred to a local neurologist who, after examining me me, determined that there was something happening in the thoracic spine, so he ordered another MRI in May of this year. That MRI showed evidence of a spinal dural arteriovenous fistula (SDAVF). I was then referred to Stanford University for surgical repair.
I received an endovascular embolization in August 2022 at Stanford and I’m currently awaiting the 3 month MRI to see how the procedure went and whether the embolization was successful.
Subjectively, I am feeling better. My balance seems better and my walking seems stronger, but sometimes it’s hard to tell day to day. I really shouldn’t complain. Reading some of the stories here I’ve been extremely lucky. The issue was diagnosed quickly, I had access to some of the best medical resources in the world for treatment, and it was a fairly straightforward fix as far as these things go.
I guess what I’m looking for is anyone else who has been down this road before me that can give me an idea of what to expect in terms of how long it will take to see changes and when to assume this is just the way it is going to be from now on.
This condition affects each differently and it s very hard
even for neurosurgeons to give a precise outlook .
They recommend PT/OT which has to be kept up as long as necessary
or perhaps followed by strengthening excercises.
From your report, it appears that you will return to normal health
if you keep up the PT.
Even nerves (which may have been affected - they will tell you if had had IONM)
can grow back to full functionality over a 2 year window depending on the nerve.
Hi John,
My name is Franz living in Melbourne, Australia. I had similar symptoms like you leg weakness, numbness, pin & needles and balance issue. After a whole spine MRI, the neurologist diagnosed SDAVF at T10 end September 2015. My spine cord was inflamed between T2 and T12.
They performed an endovascular embolization in October 2015, but they were not able to access the point that need to be fixed. 3 days later they performed a laminectomy at T10 to fix the SDAVF. After 3 weeks rehab I was able to walk normal and the balance kept improving. Early 2016 I was able to walk almost normal. Unfortunately in 2017 I start to get spasm and balance problem. An MRI doesn’t show re-occurrence of the SDAVF, but they discover that the spine cord has shrunk slightly between T2 and T12. I was treated with oral Baclofen tablets. As the Baclofen dose needs to be increased and causing other issues the specialist suggested for an ITB pump implant in 2019. After a few Intrathecal Baclofen test the ITB pump was implanted in February 2020. I still have spasm, but is stable. Like mentioned by Karthv, each person is different. Your case might be different than my case. The specialist treating me also explained to me that every person is different after a SDAVF issue.
John I had a large AVM removed from my Cervical Spine in 2010. I had issues for years till I was finally able to get an MRI. It took me about a year and 1/2 to recover. We tested my nerves and I only had about 1/2 the function. . I could not walk 25 feet before surgery and 3 months after surgery I could walk 75 feet with a cane. So it depends how large your fistula was. If it took a small chunk out of your spinal cord then you will have a faster recovery. It is all about the physical therapy and rebuilding the nerve connections It took me two years before I could drive a car again. I had my nerves tested last August and they have all recovered. I just need to do more intense physical therapy to work everything again. It is a time issue for me. What your main concern is if the fistula grows back. I went back one year after my surgery and my MRI said it was gone. Body just needs time to heal and you keep walking and do not fall. Good luck
Just a quick welcome to our group from me! I can’t add much as I’m a brain AVMer. and had gamma knife, but some great input from some of our spinal members, thanks! Take Care, John.
Hi John I’m so glad your AVF was identified and treated early. Mine began during the pandemic lockdown starting with extreme pain in my upper back. The MRI showed an AVF at T5. At the time my dr didn’t feel it was doing damage since there was no edema on the spinal cord. They unsuccessfully tried two embolizations and after each my symptoms exploded. Weakness in both legs ankles feet and my hands arms and fingers. I finally got to Dr Lawton at Barrows Brain and Spine in Phoenix where I had surgery to clip it off. Then the real work began intense PT and OT to relearn how to walk use knife and fork and build strength. I found PT/OT gets you to the basics getting the rest of the way is up to you. Thankfully I had been working out with a personal trainer who helped me gradually build strength and mobility. I also did acupuncture weekly to help with blood flow and to help loosen my muscles. We decided I needed to treat this as though I was in rehab which others on this site confirmed. I did my exercises every single day and walked four miles even though I could only do it in my house with frequent rest. I did that for 11 months with only one day off a month for my mental health. At that point I realized I was no longer improving so switched to a maintenance plan. PT exercises 3 days per week and OT 3 days a week and my four miles of walking every day. Unfortunately I was left with significant permanent damage and chronic acute pain. I urge you to get into some kind of program to help you get the rest of your recovery. I have been accepted to a pain rehabilitation program offered by Mayo in Phoenix. It’s a17 day program that has a team of Drs and specialists and includes a total assessment of where I’m at and need work with daily PT/OT/Tai Chi/ yoga and then classes on CRM and other mental programs to teach my brain how to manage pain. Their success rate is a median improvement of 47% on quality of life. The psychiatrist believes I can do a lot better than that so I’m really excited to start in January. This will be a whole new set of skills I’ve never been exposed to and I know a lot of work. I have a fire in my belly to get as much of my life back as possible. By the way I’m 72 so I joined this club later than most. I wish you well on your journey and urge to investigate any and all options out there for help. I will let you know how my Mayo experience turns out
My T2, T5 AVMs were (finally) diagnosed around 10 years ago. Within 2 months and attempts at embellization and then catorization the causes of the problem were mitigated. The symptoms prior to the serious worsening which helped in the diagnosis probably started when I was around 13 years old, became a small concern when I got to around 50, became major concern by the time I was 60 and finally during a period of three months as I went from being better fit than most 62 year old persons to just barely being able to get up a flight of stairs the cause was discovered. The operations/procedures were completed around 10 years ago. It took about one month to relearn how to walk with a cane, two years not to need the cane, five years to being able to do moderate hikes. In the last five years small improvements have occurred.I am at the point where I can ride a bicycle but my leg muscles are pretty weak. Up to 10 years ago I used to regularly take 20 mile bike rides and had been doing so for at least thirty years prior to that. Right now I am procrastinating taking my regular 3 mile walk around the folly hill neighborhood I live in. My bike riding and hiking activities of the past have essentially been replaced by nominally 3-5 outrigger Caneo paddles each week. That is my lower body exercising replaced by upper body exercises and continual attempts to get back to lower leg muscle work.
Per pain and symptoms I have gone from pins and needles starting at toes and going pup past my knees to only at the bottom of my feet. My balance utilizing the sixth sense associated with internal nerve feelings throughout one’s body is still very bad. If I had not been an engineer/professor with specialties associated with dynamics and control of physical systems including robotics I probably would still be relearning how to walk. My walking technique was relearned by first understanding the mechanics of gyroscopic torques and Coriolus forces. That is learning how to walk up or down an inlined plane while the pathway made a turn, a simple thing to do as we learned by experience how to do such actions while toddlers is difficult to do when one’s internal motion sensing system is highly compromised. I know can do these actions by forcing my body to relearn how to do it but it is more conscience effort than anything. Thus I am subject to losing my dynamic balance if a unplanned disturbance, such as someone trying to get my attention while I do such actions. So I have to continuously monitor and eliminate spontaneous next to involuntary actions. Yes walking and talking is a real trip.
I believe things are very slowly getting better. That bike riding is my next thing to work on. My hesitance is that
The hesitance is because both building and maintaining leg muscle strength is a problem. When I skip my 3 mile walks, which is a low level but painful experience, it takes time to rebuild. Bicycling, even for persons who are not challenged like we are, is an activity that takes regular work to get better. So once I commit to doing it I will need to do it regularly to do it safely. I am very busy with other and more fun activities so I am not sure when I will commit to the regularity of bike riding.
Final couple things. I used to work in the northeast, Bethlehem PA but having been born and raised in Hawaii could regularly go back home to my place on Maui or my mother’s home in Kailua on Oahu. One of the serious after affect symptoms is that cold makes it difficult for me to walk. I noticed that when I was relearning to walk on the beach at Kailua it was much easier on those warmer days and so much more uncomfortable and difficult even when the temperature was just 20 degrees colder. Back east well it became next to impossible during the winter.
Another symptom is that I can not wear a belt unless I want my legs to go numb. In Hawaii I wear lose fitting swimwear and I am ok. But even wearing say a padded bicycle pants when I go paddling leads to some lose of leg control. I used to have to wear suspenders pants while I was back east. I finally discovered overalls, so much better.
Ok enough already. Yea life is more challenging with this issue. Yea, but you know, you just push through it all and appreciate life.
Thank you all so much! You are the first people I’ve heard from who have gone through this since I got the diagnosis. You can’t believe how much encouragement just hearing from you has given me and your experience on recovery timeframe is really, really helpful.
Like I said in my first message, I’ve got an MRI with contrast scheduled in 2 weeks to check the embolization that was done in August. I’ll post again when that’s done.
Hello I’m Eddie. I live in Central Valley. I have a similar pelvic avm. Been dealing with symptoms for several years now. Two embolizations in 2012. I also gave severe spinal stenosis. Lost feeling in legs few times. After 8 specialist not much can be done. One doctor wants to try another embolization but I’m very skeptical. Hope you are feeling better.
Hi John, I live in San Francisco. I was diagnosed w spinal AVM T11 in 2018 and Nick Telischak at CPMC performed my first angiogram. I think he’s at Stanford now. The angiogram was not 100 percent successful so eventually I had laminectomy and the fistula was surgically cauterized. To be honest, I still have the same symptoms as before treatment: weakness, balance, bowel/bladder incontinence. It took about 6 months to get correct diagnosis after my initial symptoms started, dunno if that makes a difference.
Some tips I’ve learned over the last 4 years:
I learned how to use hand controls to drive, which has given me a lot of independence back. The first couple years after my diagnosis, I kept hoping I would get better but it didn’t happen so eventually I decided it was time to learn how to drive w hand controls, rather than waiting for my legs and feet to get strong enough to drive again.
I also got a handicap placard which helped me get other benefits like RTC public transit discount card.
I’ve also applied for disability benefits like discount national parks pass and state park discount.
I try to get seats at concerts as much as I can for venues that might have limited seating. I usually call ahead for smaller venues since I love live music.
Everybody’s story is different but your post caught my eye bc of the northern California connection. I love this forum, to help connect us w this rare condition.
Hope you have good news with your follow up and best of luck w recovery and the road ahead.
