There was no event that caused the SDAVF. On minute I was fine, the next I know there was weakness in my legs. Never felt anything like it. Such an odd experience. I called the ‘on call’ nurse for my insurance to ask what I should do. Not really sure what they said. Suddenly I am on the floor with massive lower back pain; blinding pain. After it subsides, my wife bundles me into the car and takes me to the emergency room.
In the ER, I discuss with the docs about the pain and everything. They have me stand up, walk a bit. I sit back down on the bed and fire shoots from my lower back down my left leg. The feeling of my leg on fire builds as it goes from the outside of the leg down to my foot and then back up the other side, into my groin and buttocks and then starts down the back of my right leg, but stops just below my right cheek. After the fire, I can’t feel any thing on the left side of my body below the belt. I look down at someone else’s leg. I can’t move it, I can’t feel it.
My wife is standing above me, holding my hand, looking me in the eye the whole time. I don’t remember what I said to her.
Thank god for my wife. Not only is she in medicine, the woman is a rock. Stone cold under pressure. No hysterics, no freaking out. 100% present.
I spent a week in the first hospital. I was completely maxed out on pain medication. Everything is fog. I vaguely remember being in an MRI. Turns out I spent a total of 15 hours in the MRI. Scanned from tail bone to the top of my skull looking for answers.
At the end of the first week, the Neurologist comes in and tells me I have M.S. My wife looks the Doctor and says "thank you for your diagnosis, but I want to move my husband to the hospital I work at. The doctor leaves. My wife looks at me and says, “You don’t have M.S.”
Like I said, the woman is a rock.
New hospital, new doctors. More MRIs. They told me I racked up a Total time of 17 hours in the GE Exicite 1.5T MRI machine. Days go by. No one knows what is wrong. For a teaching hospital, my case is red meat. Teams of Doctors stop by; young, old, some in training, some close to retirement, some just to see what the excitement is about. One day a Neurologists sees something on my MRI. A “smudge” in my lower spine, not sure the exact location. More tests ordered. A total of one pint is siphoned off and “scienced the shit out of”.
A new test is ordered. A “procedure”. It was described to me as sticking a tube into my groin artery and extending the tube through the various arteries of my body until it stops near where the smudge on the MRI was in my spinal column. At that point, they will inject radiation and a whole host of other things to see what they can see. It’s called an angiogram. I’m first up the next morning.
Later that night, two serious looking doctors come in to my shared room. They look like they just came out of surgery. They’re on autopilot. I see it in their faces.They don’t say a word to me at first. One gently rolls me on my side, the other does something and tells me to bear down, like I am trying to poop. They roll me back over, go over to the computer, open up my chart, type something in. Then they leave. Like apparitions in the night. Night stalkers.
The angiogram confirms the theory; SDAVF. There is good news and bad news. The Fistula has clotted by itself. The bad news, the vein is still horribly distended and pressing on the spinal cord. New medication is prescribed. Feeling starts coming back to my left side. I can raise my leg. But I still can’t feel it. There is hope.
TWo years on I have significant nueropathy in my left leg/foot, burning in my left buttock and part of the right. The pain is intense enough that I can’t sit for more then 20 minutes before pain drives me to stand. Am on multiple pain meds. For long trips, I bought a foam pad and I lay down in the back seat. Went through physical therapy to learn how to walk again, and walk with a walking stick. My left leg buckles so I have to deal with that. Am mostly incontinent.
Unsurprisingly I have PTSD from the whole thing.
-TLDR-
My SDAVF came on without warning. Paralyzed me on the left side from the waist down. Two years on with physical therapy I can walk with a walking stick. Have nueropathy and intense pain on left side below belt. Am mostly incontinent. PTSD.
