[Steve]

My name is Andrew and I'm a 44 year old male living in Maryland. Today is 2/13/09 and my symptoms started approximately 6 months ago. It all started with a sudden pain in the middle of my back that I thought was a kidney stone, although I'd never had one before. Since I didn't have insurance, I figured I would wait to see if it passed for about a month before seeking treatment. During that month, the pain seemed to move from my back to my groin area which seemed consistent with my self diagnosis. When the pain moved from that area to my right foot, calf, and thigh, I knew it was time to get help.

After seeing a family physician and a trip to the ER, I began to think it was a nerve problem in my back. The ER diagnosed it as a problem with my siatic nerve which I had experienced on and off for quite a few years. It seemed like every few months, if I didn't exercise enough, I would have pain in my lower middle back and down my right leg. The only other symptoms I had prior to the severe back, groin, and leg pain, might have been frequent urination and tightness in the calf muscles in both legs. However, that pain was infrequent and nothing compared to what I began experiencing.

The ER prescribed pain medication and while this helped alleviate the pain, I began to realize that it was becoming difficult to walk and within a very short period of time, I found myself dragging my right foot behind me. Instead of walking up stairs normally, I had to go one step at a time since my right leg would not support my weight. This progressed quickly and I found myself unable to walk long distances or even short distances within 2 months of the onset.

I made an appointment with a local neurologist and was sent for an MRI that day. That may have been the decision that kept me from being in a wheelchair for the rest of my life. Upon reading the MRI, my neurologist noticed some type of particles around my spinal cord. He told me he thought I had a tumor on my spine. However, it appeared to be higher than this MRI showed and sent me for another, higher up on my back. This MRI clearly showed that it was not a tumor, but a spinal AVM at the T11 thoracic region of my spine. He told me I was born with it and it was very very rare.

He then sent me to the University of Maryland Hospital in Baltimore where I met with a neuro surgeon who had experience with all types of AVM's. He scheduled an angiogram, an extensive one which they put me under total sedation and took 3 hours to perform. Although they weren't able to fix the AVM at that time, they could see where it was and that it would require surgery.

This procedure, which I believe is fairly new, utilizes micro-surgery with the addition of flourescent dye which allows them to see the vein which is causing the problem. They could determine that it was a fistula (cluster of veins) where one tiny vein (smaller than a human hair) was shooting high pressure blood cells onto my spinal cord.

The surgery took 4 hours and was not a simple one. It required them to cut my back open, remove a portion of bone covering the spinal cord, and also go through the muscles in order to get to the tiny vein causing the problem. Using the flourescent dye and a microscope, the surgeon was able to clamp off the vein, allowing the blood to circulate normally through the fistula. I was in the hospital for 6 days. After the surgery I could not raise either of my arms very far or walk or stand.

2 days after the operation, I was able to get up out of bed, but the pain was so severe in my back that I couldn't walk, although I tried with a walker. The 3rd day the nurse made me get up and use the walker and "work through the pain". I finally took a step or 2 as much as it hurt, but I realized that the more steps I took, the less pain there was. I was up and walking with the walker around the hospital after that. Even sitting up in a chair was difficult, but I think this is the most important thing after this operation.

Upon returning home (with help) I was able to walk with the walker and finally on my own after another week. After being on pain medication for so many months it is hard to tell what you can do and the damage that was caused by so many months of not being able to walk normally. Also, going off the pain med is not easy, but is necessary after a few weeks to a month. I was amazed at the loss of muscle in my butt and legs and feet after these months. Also, I had a lot of pain in my lower back, butt, groin, down my right leg and foot and problems going to the bathroom normally. It seemed to me that the nerves were damaged in these areas and I just couldn't tell when I had to go until it really caused a lot of pain both from having to urinate and/or have a bowel movement. (They had used a catheter during the surgery and when they took it out a day or 2 later I couldn't pee, so they had to put one back in for another day and then I could thankfully go).

It has now been about 2 months since the surgery and I'm thankful to be where I am. I try to walk and exercise as much as I can, it seems to alleviate the pain and weakness in my legs, but also can be painful the next day. I make myself do it again...and again. As the nerves grow back it can be painful, but little by little it does improve. It seems as though the pain you end up with is where it all started and I have to have a "use it or lose it" attitude. I have gone through depression at times when it seems like it will never get better and I often cry both when I think of how I used to be, but also at how far I've come..and the work that is left to do. Going to the bathroom is not exactly normal, but I hope that will improve as time goes by. I cannot get a normal erection and have not had sex, but I can ejaculate. Again, only time will tell.

I've written this lengthy story because I haven't found too many very similar to my own. I hope that whoever reads this will find value in it and know that there is hope and that the body is an amazing thing. When you think all is lost, don't give up because your life can be fulfilling again. Most of all, listen to your body and find the best doctors you can. Good luck and God bless. Andrew