This Is MS Multiple Sclerosis Community: Knowledge & Support

I was scanned for CCSVI this morning (with Essential Health) and found I do have CCSVI.

I am in shock as I don't have an MS diagnosis but have many neuro symptoms and I've been searching for a cause for a long time.

If I post my report here would someone be kind enough to help me work out what it means?

I know I have stenosing and malformed valves on my internal jugulars but no significant evidence of reflux.

Thank you in advance.
Cindy

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Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.

Well I'm not a doctor so this is just my opinion. There is a lot to be learned regarding CCSVI and MS. Some doctors are reporting that liberation treatment gives significant improvements to about 1/3 of patients. Another 1/3 get no improvement and the rest are somewhere in between. There is also a chance of getting worse. Restenosis and blood clots following treatment are not uncommon. Very few patients were treated more than 1 year ago. So long term results are not well known. The procedure may cost between $7500 and $40,000. And you might have to get it done more than once.

The CCSVI tracking project might give you a better idea of how the treatment might affect specific symptoms. http://ccsvi-tracking.com/

Only you can decide if the treatment is the best option for you.

Hope that helps.

David,
Many thanks for the reply and the balanced view of things.

What I am wondering is if I can have symptoms if there doesn't appear to be any significant reflux - my understanding was that the reflux causes the problems?

Or perhaps that's what seperates me from having an MS diagnosis as I am not refluxing but clearly have a problem that need investigating.

Wow, it's so confusing. I am not sure if I am meant to be 'celebrating' finally finding a reason for my symptoms or not!

Cindy

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Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.

Many apologies - I believe I misread the report!! I've been in such a tizz since I found out I have confused myself!

I will type it out here:

Right internal jugular vein is collapsed in erect position and no normal venous expansion noted in the supine position. There is venous expansion noted in the left IJV in the erect position. There is marked reduction in flow velocity and volume noted in both internal jugular veins in the supine position. On the right there is a significant mid stenotic lesion measuring 1.7mm diameter and on the left also a mid stenotic lesion measuring 3.0mm.

Evidence of bilateral valve abnormailties noted. No significant relfux.
Normal vertebral flow noted in both sides. No evidence of reflux.

I think I got confused over the 'vertebral flow' as I didn't realise this is an artery and not a vein.

Given that my valves and veins seem pretty rubbish, does this mean I am having trouble 'draining' the blood from the brain? This would make a whole heap of sense to me for my symptoms but I want to be sure.

Thank you for reading this far if anyone has yet!

CindyCB

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Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.

These questions might be better directed to Dr. Sclafani http://www.thisisms.com/ftopict-10680.html

David, many thanks for your help
CindyCB

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Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.

Hi Cindy---it's confusing. No worries.
Hope I can talk you thru it....
The vertebrals are veins. They are the ones that take the blood back to the heart when you are upright. The jugulars work when you're lying down (supine)

So---in your situation, the left IJV is expanded when you're upright..this is not normal (it should be collapsed). When you're lying down, your blood flow thru your jugulars is slower than normal. And your valves are abnormal, too. These abnormalities add up to CCSVI, even though you do not have reflux, or an MS diagnosis.

Slowed bloodflow through any organ in our body can harm that organ. It does so to the liver in Budd Chiari disease, and it takes decades to manifest as liver failure. So, your slowed blood flow maybe hasn't activated the immune system in your brain (forming MS lesions) but it's giving you symptoms. Read up, learn all you can, ask questions.
Here's the CCSVI Alliance website for more info- www.ccsvi.org
I wish you further answers and healing,
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Cheer,
Thank you for taking the time to explain that to me - it makes tons more sense now!

I can feel the difference between lying and standing and how it effects my symptoms (both in 'bad' ways but definitely different symptoms) so this would be a good explanation.

CindyCB

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Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.

CindyCB - check your PM's

Thank you - I have replied.

CindyCB

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Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.