Am I the only ome with Avm of the spinal cord on here?

I see a ton of people with Avm of the brain and no one with it in spinal cord?

Hi and welcome. There are several members with spinal AVM’s. Go to Members section and type in ‘spinal’ in the search box and that should show you a bunch. I’m sure you will get lots of replies to this post too.

Hi Kim,

I have an intramedullary spinal cord AVM and aneurysm at the C-7 to T-2 level. They have been embolized once, and the AVM was 'obliterated' with the procedure (leaving me with the aneurysm still). I found out from my latest angiogram in September of 2010 that the AVM has grown back.

I live in New Mexico and go to Phoenix to the Barrow Neurological Institute for my testing and treatments. I'm going back in April for another angio and hopefully they will be embolizing the AVM again then.

I read on your profile that yours hasn't been treated yet - have you had an angio, and have you been told if there are any treatment options available for you? Also, have you had a bleed? Did you find out about your AVMs through an angio, or another way?

Have you had any kind of deficits from your AVMs? I hope not. ;-)

There is also a spinal group here that you are welcome to join, and there are also a couple of other groups you may be interested in - one is the Extremity group, for those of us whose AVMs are not in the brain, and also a group for untreated AVMs. If you look on the front page on the right side kind of towards the bottom you'll see where you can click to see the different groups. http://www.avmsurvivors.org/group/spinalavf

Welcome, and glad you've found the group, and please let me know if there's anything I can do to help or if you have any questions.

Tori

Hi Kim,

I have an intramedullary AVM like Tori except mine is from the base of my brain down past C2. On March 3rd I'll be seeing the doctors to find out if I'm a candidate for CyberKnife and or embolization. I was diagnosed in 1989 so it's been a long time coming for me.

There are, unfortunately, other spinal AVM'ers here. I am glad that you found us, this site has been very important to me through the years, everyone here understands and are always willing to listen and to help when ever they can.

Kim (Great name huh?) ;-)

You guys I don’t have full access on my phone so when I get a chance I’ll go on the desk top and look some more. As far as my Avm I started working out really hard in 2007-2008 all of 08 when I say hard I just mean very dedicated. I actually started getting super bad back pains coulnt figure out when I had a menstrual cycle why I almost felt like dying it hurt so bad. I would have found this out early in my life had I been regular with cycles but thank God I only had 1 or 2 a yeary whole life. I thought maybe cause I’m only 5’4 and 110 that working out wasn’t good for me.

So I had to find someone who would give me an MRI found a Nuro and he sent me to Dr. Richard Fessler in Michigan. He’s a good doctor but doesn’t ever tell me anything. So see him he set me up with an Angiogram in Feb of 2009 I have it from T-12 to L-4 I had to have a spot on my lower left ultrasound because
they seen some buldge and I have a spot on my lower left that they think maybe connected to my L3-L4 I ask my doctor questions it almost seems like he thinks I’m over worried. He’s really intelligent but makes me feel stupid for asking anything…hope that makes sense.

NEVER feel stupid about asking a question. How else are you going to find out info. It’s your body and you need to have answers.



Kim Sawyer said:

You guys I don't have full access on my phone so when I get a chance I'll go on the desk top and look some more. As far as my Avm I started working out really hard in 2007-2008 all of 08 when I say hard I just mean very dedicated. I actually started getting super bad back pains coulnt figure out when I had a menstrual cycle why I almost felt like dying it hurt so bad. I would have found this out early in my life had I been regular with cycles but thank God I only had 1 or 2 a yeary whole life. I thought maybe cause I'm only 5'4 and 110 that working out wasn't good for me.

So I had to find someone who would give me an MRI found a Nuro and he sent me to Dr. Richard Fessler in Michigan. He's a good doctor but doesn't ever tell me anything. So see him he set me up with an Angiogram in Feb of 2009 I have it from T-12 to L-4 I had to have a spot on my lower left ultrasound because
they seen some buldge and I have a spot on my lower left that they think maybe connected to my L3-L4 I ask my doctor questions it almost seems like he thinks I'm over worried. He's really intelligent but makes me feel stupid for asking anything...hope that makes sense.

KIm I also have an AVM of Spine C4 to about T2. I am having angiogram on March 15 hopefuly with embo. Can I ask what your symptoms are? I have not had a bleed but did have a seizure 16 years ago which they do not think was caused by the spinal avm. I have tinglng and numbness in left arm and left leg, also weakness in arm and leg muscles. Good Luck and thanks for any input.

Welcome to the group I am sure you will find many friendly people to chat with. My husband has been told he has a spinal AVM. He just had a 3rd angiogram with no luck finding the little devil. My husband has severe lower back pain,tingling in both legs,weakness in both legs,his legs seem like they are giving out when he is walking, and the symptom that makes me ill everytime I hear him say it is that it feels like someone is taking a cheese grater to his legs along with the feeling that someone is poking him with a hot poker in the hips. His most recently began to have swelling in both legs and discoloration in both feet. He has fallen many times,and has bladder control issues.