Hello Everyone. I read some posts. I feel very alone as most of the other spinal avm members feel. I was recently diagnosed by MRI with an AVM in my spinal from T10 to L1. I was called into the nuerologist office 2 weeks before my follow up to MRI appointment. It was June 15th 2017 … the day before my birthday. It is not as dramatic as it sounds. I left work an hour early to go.
The doctor came into the waiting room to get me and put his arm around me as we walked down the hall and said we were going to his office and not the exam room because he had a complicated thing to discuss with me. My heart dropped. I have to say I’m sort of scared but also relived it was not something worse like multiple sclerosis because that was the condition I was ruling out with MRI because of my strange symptoms. He seemed to think the spinal avm was curable and referred me to Columbia in NYC. I am going there this week on June 29 2017. The Columbia doctor wanted me to go sooner on 22nd but I couldn’t take off work.
Does anyone else on here with spinal avm have Lhermitte’s sign? Does anyone else only get tingling shocks when active, such as walking briskly or trying to ride bicycle?
I have pain a lot. Sometimes I have issue with bladder when bending over. I always have problems with leg tired or going numb? Do you?
I read online about treatment options but I am also scared to even address this because of the horror stories of recovery. I’m going to find out more this Thursday and I guess I need an angiogram next.
But mostly, I want to tell the other spinal avm members you are not alone and don’t go away from the boards because I need someone to relate to!
Welcome to the site. I can see you’ve been very active, reading already, which is great. I can also see you’ve found the Spinal AVM category.
Suggestion… spinal is relatively rare, so you’ll do well to do as you have started to do… find conversations that are relevant and ask questions. Normally, I recommend not restarting very old conversations, as it can be quite frustrating and for that matter quite difficult to follow. Feel free to restart conversations up to 9 months old, perhaps.
Where you need to get input from people because you believe they have similar experience or symptoms, you can make a post be sent to them (rather than hoping they log on and browse to find it) by using their “@” name, e.g. @Gina3 or @DickD. Obviously, please be patient if people don’t respond: we are all dealing with issues of one magnitude or another, may not wish to talk about some subjects, or if people last logged on before Aug 2016, may never have used the new site. (We moved to a new platform in summer 16). Suggest you only “@” people who you can see have contributed since that move.
Good luck with all of it! Whether we have a Spinal AVM, Brain, Foot or whatever, we can all be here for you if the going gets a bit tough; and we may have been through some of what you will, so I hope you’ll feel among friends.
Hi Gina
I have a cervical spine AVM too. The symptoms you describe could be me ! By the time you get this you would have been for your appointment. How did it go ? We be good to chat to someone that has the same condition as me as sometimes it’s so frustrating that people just “don’t get” what I try to describe. I have the pins and needles 24/7 in some degree. Some days are good some not so good. Have the heavy numb legs, mostly left and that sometimes causes me to trip over. Very similar to you where they thought MS at first. Have had numerous MRI and an angiogram too. Would be good to chat to someone else as I feel so alone sometime Take care and hope to catch up soon Amanda
Hi Amanda, I thought I responded to you already but I guess I forget to send the message. Sorry for the delay. My appointment didn’t go as well as I had hoped. I was hoping to know exactly what kind I had and what I was going to do next and all that. Apparently they cannot see it on the MRI they only see the veins are very large on my spine. So I had to schedule an angiogram for July 28th 2017. I wish my appointment for the angiogram was sooner but I did not want to go on a Monday or Tuesday and then have to go to work the next day? I was not sure how I would feel afterwards? They said it takes all day because they put you under and then you have to lay still for 6 hours after. My avm is most likely the type 4 one they are speculating. Did you have any treatment yet? You mentioned you did the angiogram. If yours is cervical you must have way more problems than I do, mine is thoriac so just my abdomen and legs are affected.
Hi Gina
I am sorry you did not get some of the answers you were hoping for. I found that my MRI was not giving the full picture and it is when I got my angiogram that things were clearer. I was lucky enough to not have the general anaesthetic for the Angiogram as long as I promised to stay very still ! it was a strange feeling when they injected the dye, kind of like having a light fuzzy warm feeling. I had to stay lying flat for 6 hours but got hone not long after that. The radiologist was great and was able to show me my AVM which looked pretty much like a tangled ball of wool . My symptoms range from weird "ice pick headaches, balance problems, fatigue, pins and needles in arms hands and legs. .memory. Heavy legs, tripping over feet, bowel and bladder problems. I consider myself fortunate that despite this I can lead a near normal life i am afraid I dont undetstand all the numbers ant types much but I remember my neurologist said a juvenile type which has 3 feeder veins, 3 anaueysms, and I have since found out at my last appointment with my specialist that the nidus tangle bit is inside my spinal cord but also the AVM is outside the spinal cord. He has said there is no treatment for me just now but science is progressing. He had said if he tried to do anything he would probably put me in a wheelchair, but there is also the risk of this as time goes on. I am positive in my thinking and feel that I focos on the word possibly ! Lol . I have to go in for a comparison MRI in August and hopefully they can see what changes there are after my suspected bleed in November. It has been a long journey but I am grateful for where I am just now. My symptoms have a degree of impact on my day to day living but this fluctuates and I have lived with a lot of the symptoms that long that I just live with them xx
Amanda, I like your positive attitude! Do you currently work with all of your troubles? I do not have any bladder or bower problems other than I pee if I bend over or sneeze and constipation but frankly I thought everyone else even healthy people have those same problems anyways. The doctor said that wasn’t related unless it becomes a “Can’t go at all” issue.
I hope they figure out a safe treatment for you, because if they could do it then your neurological symptoms may be reversible I think and the wheelchair would be out of the picture. I’m not sure what’s going on really but what is a suspected bleed like?
Right before my tingling that never went away (it started in the begging of this year) I had a strange episode (it was dec 25 at like 8pm where I thought I felt my appendix fill up and then I heard it explode and juices squirting out. I was in so much pain I couldn’t move and just rocked back and forth while crying in my bed until the next morning (I did take Advil). I was able to gather the strength to walk to the car in the morning. When I got to the hospital they saw nothing on the Ct scan or my ovarian ultrasound. They said I had fluid in my abdomen and told me they didn’t know what happened and I look good to go home. Looking back on it I wonder if that was a bleed but no one knows and it’s really just speculation they say. I look back a lot now though and I’m remembering times where strange things happened. I used to get tingling in ny stomach after sex or taking a shower and weirdly after I blow dry my hair.
I’ve a spinal AVM at T4/5 which was discovered in 1971 when I was just 15 as I’d noticed one leg was skinnier than the other n wd lock at the knee. This eventually paralysed me when I was 27. I get tingling feelings below the level of T5 n my bladder n bowel are affected.
There are so many treatments available these days so I hope you get back to normal, whatever normal is!!
I’m sorry to hear your paralyzed. Do you ever have back pain/spine pain?
It feels like I got kicked in my spine sometimes abd even moving my head can pull on the pain in my mid/lower back. I’m asking because you have your AVM for so long.
The doctors tell me it’s not related to the Avm I have and act like pain is a weird complaint.
Sorry for my slow reply. I intended to get back to you but was a tiring day and headed to my bed early
I am still working full time. I am a nurse so had to change my role slightly due to the risk on my ward. I have had my pins n needles tingling away for so long … probably more that 5 years I would think. The tingling goes up and down my arms, hands and legs and sometimes over my abdomen and around my saddle area. Also get this horrid numb heavy feeling in my legs especially the left which feels like concrete sometimes and causes me to trip or limp. It seems that many things can set off the tingling. Sometimes just moving my neck slightly or when I am driving on a very bumpy road. My bladder and bowel issues are sporadic but mostly it’s the loss of bowel control that has happened on a few occasions that has been really difficult to live with. I am working with my diet to try and control it that way. The have told me that I have lost some of the sensation but not completely thank goodness. I seem to have inherited random pain symptoms between my shoulder blades and top of my arms in addition to my neck pain.
That sounds like a scary episode you had and very painful . I take it what they call a suspected bleed in my case is a very sudden onset of the worst headache due to the possible bleed from my cervical spine AVM into the spinal cord which I suppose caused some brain trauma and the symptoms of increased symptoms overall but added issues with walking. It was kinda how I witnessed the victims of mild stroke I have worked with, where I seemed to rally round after about a week or so but overall there seems to have been a progression of symptoms but not debilitating. I feel very fortunate that I am still able to function and work. I do hope that in the near future they will be able to do something not just for me but all the other sufferers out there. Got my MRI in August so that will be a comparison of how the AVM has changed over 18 months .
Take care
AMANDA xx
Thank you for your message. Good to hear that you have had some successful treatment
I have had my comparison MRI (had to get a general anaesthetic as could not face another long time in the mri). Unfortunately despite being only some small changes in the AVM, they also reported some additional small anaurysms. There is still no treatment they can offer me without the high risk of paralysis or worse. My symptoms continue much the same, some worse than others and some hang around for a bit then I get some respite for a few weeks before they are there again. My medication helps a bit which is a bonus. I am meant to be monitored by a neurologist but it has been 4 months since my last consultation and still no word. I am lucky that I have a good GP and also my Occupational Doctor through my work (work for NHS). They both keep chasing this up for me. At the moment I continue to work (have changed role and reduced my hours) and try to have as normal life as possible. Worry and anxiety are my big problems just now as I am going through a very symptomatic period with my AVM. But I have a good family and friends that support me as best they can even if they do not really understand my illness
Take care and hope to catch up soon Amanda 
it was a strange feeling when they injected the dye, kind of like having a light fuzzy warm feeling. I had to stay lying flat for 6 hours but got hone not long after that. The radiologist was great and was able to show me my AVM which looked pretty much like a tangled ball of wool 
i am afraid I dont undetstand all the numbers ant types much but I remember my neurologist said a juvenile type which has 3 feeder veins, 3 anaueysms, and I have since found out at my last appointment with my specialist that the nidus tangle bit is inside my spinal cord but also the AVM is outside the spinal cord. He has said there is no treatment for me just now but science is progressing. He had said if he tried to do anything he would probably put me in a wheelchair, but there is also the risk of this as time goes on. I am positive in my thinking and feel that I focos on the word possibly ! Lol . I have to go in for a comparison MRI in August and hopefully they can see what changes there are after my suspected bleed in November. It has been a long journey but I am grateful for where I am just now. My symptoms have a degree of impact on my day to day living but this fluctuates and I have lived with a lot of the symptoms that long that I just live with them xx