Hello! I’ve just recently been diagnosed with a large spinal AVM (T11-S1) and an absent IVC, both coincidentally. I have had back problems and found I have 3 slipped discs, spina bifida occulta in 1 vertebrae, scoliosis and 2 fused vertebrae. I assumed the nerve pain in my legs was from the discs etc but after an MRI and angiograph to get a better look at the discs etc, we have found these other issues. I was fine with the disc stuff but now I know about the AVM and absent inferior vena cava I am terrified. I have an appointment with a neurologist next week in Melbourne so will know more then but for now reading these forums is making me more scared! Does anyone have some good stories to tell me about having found a spinal AVM and having it removed and it was all fine? Or just left alone? Haha. Any input is appreciated. BJ
BJ
Welcome to the site. You’ve got quite a lot going on, haven’t you? What I can say is that we all turn up here scared out of our wits and the process of finding out the scale of what we’ve got and finding out from people who’ve already been through the mill means we get a bit more comfortable about it all.
My AVM, and the majority here, is a brain AVM, so much of the discussion is in that space and I think different rules often apply for spinal cases. I guess the main thing is to get to talk to a consultant who you’re comfortable with, who makes sense, talks about the risks of leaving it as is or doing something about it. If you get someone who’s a bit too fly – a bit too keen to act – consider getting another opinion. If they come across as sober, considered, clearly making the right recommendations for you, then you’re in great hands.
My reading of spinal AVMs is that very often people need to leave them be. I guess it is an especially dangerous place to fiddle with, just as in brain AVMs, anything too deep or too near to vital services the neuros will often rightly stay away from.
I know what you mean about reading here (or elsewhere on the internet) it can be more frightening than encouraging but as you go through each step of learning about yours, we can be here to listen and to share.
We have a Spinal AVM section. Scroll down the home page to “types of AVM” and you’ll find some people in there going through the same stuff. Not many people – some are active on the site; older conversations may be with people who are no longer active here – so see how you get on. There is also a search facility in the site, so you can search for terms like T11, etc.
Very best wishes. Take your time.
Richard
Thanks for your response Richard. I did notice the majority are brain AVMs here which in a twisted kind of way made me feel a bit better, in the sense that everyone probably has it a lot worse than me! But then it’s frustrating too, there is so little information on spinal AVMs except for the fact they burst and can cause paralysis. Considering mine is so long and I am usually such an active person it’s pretty crazy it hasn’t happened yet but it’s killing me not being able to exercise while I am waiting for a confirmed decision from the neurologist. Thanks again for your input I’ll keep searching around the spinal AVM section too!
I think it’s a good thing to look on other people’s AVMs and be able to say “Well, at least I’ve not got that.” However, we all have uncertainty in common, so how we get on with life and put that uncertainty to one side is something we can all do together.
Richard
Hi there! I am in New York and I just found out I have spinal AVM from T10 to L1! We are similar.
I find it very difficult to exercise but I have been walking after work and I get a lot of tingling when I do that. My first appointment with the specialist for nuerosuregery is tomorrow, June 29, 2017, and I will ask him if I can keep walking. I have a MRI picture disc for him to look at. I have to miss work tomorrow which is upsetting. I do not like to miss work.
I certainly can’t do my bicycle anymore. I can’t go up inclines, I used to ride on a flat trail but I moved, it’s so hard to push the pedals on the trail where I am now bc of the inclines. The insides of my thighs feel like millions of fireworks are going off and I get stabbing pains in my legs when I try to bike.
I hope you are doing ok in Australia! 
I am positive attitude here, I love nature and reading and tea and birdwatching. I like my job and I only work from 9-4 so it’s manageable! Just when I’m ready to leave at 3 I only have 1 more hour so I thankful and smile.
I love life and I confident that if I stay positive I will attract positive to me.