CCSVI, MS, and Decompression Sickness
Posted: Fri Apr 25, 2014 12:51 pm
Well, is you asked me this morning what I was going to do this afternoon, joining an MS forum and learning about CCSVI was not in the plan.
I'm not really sure where to start in this discussion, so I figure I will through my story out there and collect the hive-mind's thoughts.
I was a scuba diver until November of 2012 when I had a serious "hit" of decompression sickness. It was "undeserved" in that nothing about the dive profile would have predicted I would get the "bends"... I did not stay down too long or come up too fast, it was rather unusual. I lost sensation and proprioception in my legs and over the course of the next few days lost the ability to walk. 10 days of recompression treatments in a hyperbaric chamber and I was discharged, a little unsteady with various other problems, walking with a cane, and relatively miserable from trunk spasticity (think MS hug, minus the MS diagnosis).
Decompression sickness is clearly vascular in etiology. For neurological DCS, the symptoms are very similar to MS. This has been pretty well described in medical literature.
Neurological recovery is a slow process, and around 18 months post injury is when you start thinking the recovery period is over, and what you're left with is what you've got. That's where I am now, 18 months out. For me, it's spasticity, parasthesias, myelopathy, fatigue... things MS patients are well familiar with. So I went to my neurologist, and I'm being shuttled around for the various tests it will take to see if his suspicions are correct and the I may actually have MS at this point.
So I've not, at this point, been diagnosed. We'll see once I've had the MRI, evoked potentials, or whatever he wants to do.
Initially I was thinking that the possibility of MS came from the fact that I have had a injury to my spinal cord, which resulted in a lesion/immune response, leading to an autoimmune disorder. In light of now reading about CCSVI however, I'm wondering if that has more to do with it... it seems to fall in line a bit better with a few other features of my "incident" and medical history that were never really addressed:
I've got a known cervical kyphosis, but my dive training promoted holding the head forward with the body flat (lordosis of the cervical spine), which might have done some wacky things regarding blood flow (is positional stenosis a thing?)
I had a wicked migraine after surfacing. Granted I was a bit more concerned about the can't-feel-my-legs thing, but the migraine points to altered cerebral perfusion as well. All the thinking at the time was I had a bubble in my lumbar spine, but that does not explain the migraine.
My family has a really strong history of heart disease. As in every single female for as long as anyone can remember died of heart disease. Is there any connection between CCSVI and heart disease? (I'm thinking maybe the heart may work harder to compensate for CCSVI?)
I don't know if I'm adding anything to the discussion or not, but all of this feels related, and I think my experience of having a vascular incident mimic MS symptoms (or lead to MS, the verdict is out on that) speaks rather well to the CCSVI hypothesis.
Thoughts?
I'm not really sure where to start in this discussion, so I figure I will through my story out there and collect the hive-mind's thoughts.
I was a scuba diver until November of 2012 when I had a serious "hit" of decompression sickness. It was "undeserved" in that nothing about the dive profile would have predicted I would get the "bends"... I did not stay down too long or come up too fast, it was rather unusual. I lost sensation and proprioception in my legs and over the course of the next few days lost the ability to walk. 10 days of recompression treatments in a hyperbaric chamber and I was discharged, a little unsteady with various other problems, walking with a cane, and relatively miserable from trunk spasticity (think MS hug, minus the MS diagnosis).
Decompression sickness is clearly vascular in etiology. For neurological DCS, the symptoms are very similar to MS. This has been pretty well described in medical literature.
Neurological recovery is a slow process, and around 18 months post injury is when you start thinking the recovery period is over, and what you're left with is what you've got. That's where I am now, 18 months out. For me, it's spasticity, parasthesias, myelopathy, fatigue... things MS patients are well familiar with. So I went to my neurologist, and I'm being shuttled around for the various tests it will take to see if his suspicions are correct and the I may actually have MS at this point.
So I've not, at this point, been diagnosed. We'll see once I've had the MRI, evoked potentials, or whatever he wants to do.
Initially I was thinking that the possibility of MS came from the fact that I have had a injury to my spinal cord, which resulted in a lesion/immune response, leading to an autoimmune disorder. In light of now reading about CCSVI however, I'm wondering if that has more to do with it... it seems to fall in line a bit better with a few other features of my "incident" and medical history that were never really addressed:
I've got a known cervical kyphosis, but my dive training promoted holding the head forward with the body flat (lordosis of the cervical spine), which might have done some wacky things regarding blood flow (is positional stenosis a thing?)
I had a wicked migraine after surfacing. Granted I was a bit more concerned about the can't-feel-my-legs thing, but the migraine points to altered cerebral perfusion as well. All the thinking at the time was I had a bubble in my lumbar spine, but that does not explain the migraine.
My family has a really strong history of heart disease. As in every single female for as long as anyone can remember died of heart disease. Is there any connection between CCSVI and heart disease? (I'm thinking maybe the heart may work harder to compensate for CCSVI?)
I don't know if I'm adding anything to the discussion or not, but all of this feels related, and I think my experience of having a vascular incident mimic MS symptoms (or lead to MS, the verdict is out on that) speaks rather well to the CCSVI hypothesis.
Thoughts?