CCSVI, MS, and Decompression Sickness

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CCSVI, MS, and Decompression Sickness

Postby Majickyl » Fri Apr 25, 2014 1:51 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.

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Re: CCSVI, MS, and Decompression Sickness

Postby cheerleader » Fri Apr 25, 2014 2:21 pm

Welcome to the forum, Majickyl---(magical?)

Well, you are not the first to liken MS/CCSVI to scuba diving and decompression sickness! Dr. Philip James of Dundee, Scotland first proposed the similarities in the 1980's, because of the break of the blood brain barrier and perivenous insult in MS---and addressed the hypoxic (or low oxygen) situation he saw with hyperbaric oxygen treatment.

Here's Dr. James on CCSVI, and where MS research has gone wrong. ... 1964462211

And you are really wise to consider all of the mechanical/injury issues you've had in your past--including cervical kyphosis. This could be affecting your cerebral blood flow.

There are many avenues for you to check out---
1.vascular health as it relates to cardiovascular disease, and lifestyle modifications
(here's the endothelial health program I created for my husband, based on the book, The Cardiovascular Cure) ... ial-health

2. cerebral blood flow, CSF and the brain's perfusion which are affected by neck issues which can be addressed by venoplasty, chiropractics, atlas orthogonal treatment and surgery
a. the spine
b. the veins
c. external muscular compression

Good luck as you learn all you can, and heal your brain. Hope you continue to regain function and get back 100% of your health. My husband is going strong now, 7 years past his first MS flare---he's still hiking, biking, working and doing well, with no MS progression.
take care!!
Last edited by cheerleader on Fri Apr 25, 2014 2:28 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Re: CCSVI, MS, and Decompression Sickness

Postby lyndacarol » Fri Apr 25, 2014 2:27 pm

Welcome to ThisIsMS, Majickyl.

I have no opinions to offer on CCSVI, my recent interests are in vitamin B12; and (although I know these are not at all the same – I have read that nitrous oxide and many medications can inactivate vitamin B12 in the body's stores– could a buildup of nitrogen in the bloodstream do the same?) I wonder if you have had a serum B12 test. The recommendation is that every patient presenting with neurological symptoms should be tested for B12 deficiency. I encourage you to watch the following video – many of your symptoms seem similar:

"Everything You Want Your Doctor to Know about Vitamin B12"

I highly recommend this 50-minute documentary from the filmmaker Elissa Leonard, featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

@1:23 "The neurological manifestations well precede the hematological manifestations."

@1:46 "In 1948 scientists isolated a red crystalline pigment and named it vitamin B12. It is a primordial molecule responsible for the health of all the DNA in all our cells. The Framingham Offspring Study suggests 40% of Americans have suboptimal B12."

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness (a.k.a. paresthesia; lost sensation)
Sore Mouth or Tongue
Abnormal Gait
Mental Impairment
Visual Disturbances
Orthostatic Intolerance
Chest Pain
Difficulty Breathing
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders (a.k.a. spasticity)
Thoughts of Suicide

As for the heart disease connection… High homocysteine levels are associated with heart disease. Low B12 levels elevate the homocysteine!
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Re: CCSVI, MS, and Decompression Sickness

Postby cheerleader » Fri Apr 25, 2014 3:06 pm

Lyndacarol mentions B12 levels....which is #7 on the endothelial health program. High homocysteine is very hard of the vascular system, it damages the lining of our blood vessels.
Low vitamin B12 creates high levels of homocysteine in the blood (a sulfur containing amino acid) which damages the endothelium. An unbalanced diet, a strict vegetarian diet that excludes all meat, fish, dairy and eggs diet, or a diet overly reliant on processed foods, could all lead to low vitamin B12 levels, potentially damaging the endothelium20. ... ial-health

But there are dozens of other factors to consider. Keep looking at the big picture--you'll get there!
Husband dx RRMS 3/07
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Re: CCSVI, MS, and Decompression Sickness

Postby blossom » Fri Apr 25, 2014 5:05 pm

hi there, what an interesting story, with a lot of food for thought. there is a topic "ccsvi ccvbp" the author "uprightdoc" . your history and story would be very interesting to hear his opinion and suggestions concerning. you'll not find many if any with dr. flanagans education and knowledge of the spine, the flow and much more.

the best to you in your search.
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Re: CCSVI, MS, and Decompression Sickness

Postby dania » Sat Apr 26, 2014 6:05 am

Very interesting. I believe I have been misdiagnosed with MS.I had a fall on my coccyx 50 years ago. I have extreme cervical lordosis and lumbar kyphosis and pelvic instability from my left SI joint.All this lead to my left leg and spine being twisted.My spine is extremely compressed now.One has to understand that it took fifty years to get me being so disabled. I am like a turtle on it's back, can no longer sit or walk. You would do well to talk to Dr Flanagan,THE UPRIGHT DOCTOR on "ccsvi ccvbp".
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