Hi everyone. I am new and want to know what symptoms other spinal avm members deal with on a daily basis.
I am 31 recently married and I work 35 hours a week at a desk job.
I first experienced paralysis in my right leg from the hip down and I could not make my leg do anything but it only lasted 8 hours. Then it went away.
Then I started to suffer from back pain and as the years went on I felt really old and I couldn’t keep up with my friends.
From there the pain would wrap around my chest and some mornings I feel like someone was squeezing me all night around my ribs. I also get a tender sore spot in the cartilage between my bottom two ribs.
I like to sit down a lot when I am out in public bc I have a sudden urge I have to sit.
Then the tingling shocks started a few months after that and they shoot down my spine into my legs across the bottom of my feet and never went away but are intermittent and seem to be trigger by looking down.
Now I have numbness in my legs if I squat down to garden or scoop my cats litter box followed by sudden intense pins and needles once I stand up. I fixed that problem by laying down on a pillow or sitting on a pillow when I used to squat for garden or cat. So now I just change how I do things to avoid the pain or the tingles or numbness.
Does this sound like you too?? Or am I really alone.
Did you get yours treated? Did you get worse after?
Hi Gina3,
You are not alone …
The list of issues in my body that started approx. 7 years ago is quite long and slowly getting worst:
Sometimes got knee pain when going up/down stairs – no problems diagnosed with X-rays of the knee or leg. All cartilage and mechanical functions are OK and no arthritis.
Difficulties to pass urine – diagnosed by Urology, nothing wrong with prostate or urinary track.
Frequent constipation since past 2 years – Colonoscopy and Endoscopy proved nothing wrong with my digestive system or colon.
Can only walk for a distance of 7 Km since Oct 2014 – There after my legs are just weak and cannot move, but no pain. MRI of lower back and hips is showing nothing wrong.
From January 2015 I can only walk 5 Km, also starting to get pins and needles in booth legs and from May 2015 only 3 Km. Pins & needles feeling in my foot till knee. Sometimes feeling like have socks on. The doctors said that they cannot diagnose anything wrong and I have to just live with it because I am getting older.
Then I went in June 2015 on a one month holiday to Europe and after returning from holidays I can only walk 1 Km and the pins and needles was than from legs to hips. I then consulted a different neurologist team and finally they discovered that the electrical signal flows from my brain to my legs are slow (Just like a slow internet connection). In September 2015 they decided to do an MRI of my brain and the whole spine. They discovered that the spine cord is swollen between T2 and T10. Inside the dura of my spine cord near T10 there is a connection between an artery and a vine (DAVF). The DAVF is causing progressive thoracic myelopathy. A couple of weeks before the surgery I could only walk slowly from my bedroom to the kitchen and not further. I have to hold on to furniture or the walls.
After thoracic laminectomy & disconnection of spinal dural arteriovenous fistula (DAVF) surgery on 29th Oct 2015, all medical problems that I have been suffering since many years are begin to disappear. I can walk again…not perfect, but good enough to go shopping and do my daily life. There are good and bad days. On good days I can walk 2 Km non stop and on bad days only 500 meters. Now 2 years after the laminectomy I still don’t know what is influencing the good and bad days. I know if it is a bad or good day when I woke up. On a bad days the pin & needles in my legs are very strong and both legs are stiff and balance is bad. On good days the pin & needles are weak and my legs can move freely with a better balance when walking. My experience so far is that we need to stay positive and go on with our daily live, holidays, travel as good as we can cope with our disability.
I noticed that the number of bad days increased during cold winter days Like now we are in the middle of winter in Melbourne.
Thank you for sharing. I am glad that the surgery has lead to improvements for you. I have not received treatment yet but will have my angiogram on Friday July 28th. I wish I had scheduled it sooner. Yesterday I was walking around my neighborhood and visiting with neighbors for 4th of July celebrations. At the time I had a tightness in one leg and an ache in my back but I ignored it. Today when I wake up it feels like I have charlie horse in both legs and from knees down i have pins and needles that will not go away. If I lay down the pins and needles feel less. I also had a sharp pain in my back when I woke up but doctors say that is costochondritis? It’s tender between my bottom two ribs. I don’t know if it is related. So today I feel bad but to read your story makes me feel less alone and more hopeful. It all started for me the past few years but in the beginning of this year to get progressively worse. This year I am not really having a period of time where things go away. It used to come and go now it just stays the same or gets a little bit worse. But walking seems to be the irritator for me.
Hi, I have a spinal AVM near the conus medarallis at the bottom of my spine, started with sudden back pain then slowly getting weaker legs and numbness in legs, this was June 2015, took a while to be diagnosed and in oct 2016 had partial embolisation to try and stop the symptoms getting worse, was told I would end up in a wheelchair if not done, since then I went back for some more in march but was told it’s to risky to do anymore and it’s stable at the moment. I feel iv got no worse but I have real balance trouble, need to walk with 2 crutches, I am trying to walk more but then get back ache, have bladder and bowel issues, numb bottom and groin area, drop foot, etc it’s a very strange feeling sometimes and have good and bad days but feel very isolated at times
Hi Jamie, I’m sorry to hear about your difficulties. Especially your balance and foot drop which makes it very difficult to walk and your back pain. ️ I actually did not go into work today because of my back pain and the pins and needles in my lower legs So I understand your pain in a way.
I hope you find a friend in me, I feel less isolated by being a part of this website.
Yeah I know how you feel. Have you had your angiogram yet? My AVM is complex and quite big so the specialists are being cautious. I live in UK so due to smaller population it’s even more rare. I have a good team looking after me. Day to day life can be hard but I have a 20 month d boy so he keeps me going just heartbreaking that I can’t do normal dad things with him. I don’t really get pins and needles just random sharp pains here and there but I feel for you , it’s really hard sometimes explains to people as unless you’ve got this nobody really knows, do you find this?
Yes, I find no one understands or they never heard of it but some people want to know more. I try to explain what it is and from their perspective they say at least it was not MS which I agree so I try to look at the bright side. Until I do the angiogram I’m going to be unsure how I feel. Because I don’t know what I’m dealing with exactly.
I’m sorry you cannot do dad things without pain or difficulty.
Like now we are in the middle of winter in Melbourne.