Could someone help me get my head around it all?

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

Could someone help me get my head around it all?

Postby CindyCB » Sat Jan 29, 2011 10:58 am

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
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
User avatar
CindyCB
Family Member
 
Posts: 71
Joined: Sat Dec 04, 2010 3:00 pm
Location: UK

Advertisement

Postby David1949 » Sat Jan 29, 2011 11:53 am

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.
David1949
Family Elder
 
Posts: 645
Joined: Mon Aug 23, 2010 2:00 pm

Postby CindyCB » Sat Jan 29, 2011 12:10 pm

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
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
User avatar
CindyCB
Family Member
 
Posts: 71
Joined: Sat Dec 04, 2010 3:00 pm
Location: UK

Postby CindyCB » Sat Jan 29, 2011 12:37 pm

Many apologies - I believe I misread the report!! 8O 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
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
User avatar
CindyCB
Family Member
 
Posts: 71
Joined: Sat Dec 04, 2010 3:00 pm
Location: UK

Postby David1949 » Sat Jan 29, 2011 1:04 pm

These questions might be better directed to Dr. Sclafani http://www.thisisms.com/ftopict-10680.html
David1949
Family Elder
 
Posts: 645
Joined: Mon Aug 23, 2010 2:00 pm

Postby CindyCB » Sat Jan 29, 2011 1:29 pm

David, many thanks for your help
CindyCB
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
User avatar
CindyCB
Family Member
 
Posts: 71
Joined: Sat Dec 04, 2010 3:00 pm
Location: UK

Postby cheerleader » Sat Jan 29, 2011 2:56 pm

CindyCB wrote:Many apologies - I believe I misread the report!! 8O 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


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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5073
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby CindyCB » Sun Jan 30, 2011 12:16 am

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
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
User avatar
CindyCB
Family Member
 
Posts: 71
Joined: Sat Dec 04, 2010 3:00 pm
Location: UK

Postby SaintLouis » Sun Jan 30, 2011 9:54 am

CindyCB - check your PM's
User avatar
SaintLouis
Family Elder
 
Posts: 153
Joined: Sun Dec 13, 2009 3:00 pm

Postby CindyCB » Sun Jan 30, 2011 10:32 am

Thank you - I have replied.

CindyCB
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
User avatar
CindyCB
Family Member
 
Posts: 71
Joined: Sat Dec 04, 2010 3:00 pm
Location: UK


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service