PPMS and CCSVI

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

PPMS and CCSVI

Postby foreignlesion » Fri Jan 29, 2010 4:18 pm

The research says that there is little to no improvement in those who suffer from progressive MS, but has there been any signs of disease progression?

It also says that in 90% of those with PPMS , the blockages occured in the veins leaving the spine, not the brain. Can this occur anywhere along the spine? Is there a different testing protocol?
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My question too

Postby fogdweller » Fri Jan 29, 2010 4:39 pm

I have PPMS and am curious obout that too. I am convinced for scientific reasons that at least as of right now the CCSVI researchers are looking in the right directonl, but that leaves those of us with significant nerve damage already suffered pretty much the same as before.

The big problem seems to me how to measure progression over a reasonable length of time. I think that is one of the reasons that little research has been directed at PPMS, because unlike RR where researchers can simply count relapses and compare that between placebo and treatment, no good objective measure exists.

I have had a very slow progression, which makes it difficult for me to even know if something I am doing makes any difference. However I have been progressing now for over 35 years, so the disease is very obvious, but how to come up with a measure that could yeild results in a year or two?

Also on a related question, does anyone know what the effect of treatment for CCSVI is on chronic neuropathic pain?
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Re: My question too

Postby cheerleader » Fri Jan 29, 2010 4:49 pm

fogdweller wrote:I have PPMS and am curious obout that too. I am convinced for scientific reasons that at least as of right now the CCSVI researchers are looking in the right directonl, but that leaves those of us with significant nerve damage already suffered pretty much the same as before.

Also on a related question, does anyone know what the effect of treatment for CCSVI is on chronic neuropathic pain?


There is so much we still don't know about the long term benefits of relieving CCSVI. My husband still has neuropathic pain in his legs, and we think that's from the large lesion on his cervical spine. His cerebral issues (brain fog/fatigue) are so much better. We think it's because the spine is less forgiving of nerve damage than the brain, since there's less plasticity and less material to recruit for rerouting...but we really don't know. He's only nine months out...there may be more healing in the future. The hope is that in opening the veins, disease progression can be halted. Again, only time and more research will confirm this. It's a conundrum....but something my husband felt ready to try- after seeing what his veins looked like on MRV.

Also...several of Zamboni's PPMS patients were missing veins along the spine, and he was not able to address their malformation, so they weren't really "liberated." Vascular surgeons will be working together to figure out the best answer for these complex venous issues.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mshusband » Fri Jan 29, 2010 5:32 pm

Cheer: So let me ask ... how is the blood getting into the spine if the PPMS people don't even have the veins?

OR - better yet - are Zamboni et. al testing and correcting the veins near the spine as well in these tests?
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Re: My question too

Postby Rokkit » Fri Jan 29, 2010 5:33 pm

cheerleader wrote:Also...several of Zamboni's PPMS patients were missing veins along the spine, and he was not able to address their malformation, so they weren't really "liberated." Vascular surgeons will be working together to figure out the best answer for these complex venous issues.


When Dr Dake did my venography, I asked him to look at my lumbar plexus which he did. At my follow-up, I asked him if that region had the "agenesis" problem noted by Zamboni. He didn't really seem to know for sure. But at least I have the CD with the venography pics. If anyone has a suggestion on where I could get a second opinion on the pics, please post.
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Postby cheerleader » Fri Jan 29, 2010 5:53 pm

mshusband wrote:Cheer: So let me ask ... how is the blood getting into the spine if the PPMS people don't even have the veins?

OR - better yet - are Zamboni et. al testing and correcting the veins near the spine as well in these tests?


I'm assuming there are collateral veins that are overloaded, creating the reflux. leakage and slowed circulation into the spine- like the situation in the jugulars. Zamboni treated azygos blockage, but not angenesis.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby foreignlesion » Fri Jan 29, 2010 5:55 pm

Because of the word "agenesis", found an old thread on this subject.

http://www.thisisms.com/ftopic-8854-0.html
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Postby bluesky63 » Fri Jan 29, 2010 7:24 pm

Fascinating read:

http://radiographics.rsna.org/content/2 ... l.pdf+html

ABSTRACT

Congenital anomalies of the inferior vena cava (IVC) and its tributaries have become more commonly recognized in asymptomatic patients. The embryogenesis of the IVC is a complex process involving the formation of several anastomoses between three paired embryonic veins.

The result is numerous variations in the basic venous plan of the abdomen and pelvis. A left IVC typically ends at the left renal vein, which crosses anterior to the aorta to form a normal right-sided prerenal IVC. In double IVC, the left IVC typically ends at the left renal vein, which crosses anterior to the aorta to join the right IVC.

In azygos continuation of the IVC, the prerenal IVC passes posterior to the diaphragmatic crura to enter the thorax as the azygos vein. In circumaortic left renal vein, one left renal vein crosses anterior to the aorta and another crosses posterior to the aorta. In retroaortic left renal vein, the left renal vein passes posterior to the aorta. In circumcaval ureter, the proximal ureter courses posterior to the IVC.

Other anomalies include absence of the infrarenal IVC or the entire IVC. These anomalies can have significant clinical implications. Awareness of these anomalies is necessary to avoid diagnostic pitfalls.
Last edited by bluesky63 on Sat Feb 06, 2010 9:30 am, edited 1 time in total.
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Postby Sharon » Fri Jan 29, 2010 8:03 pm

mshusband wrote:
Cheer: So let me ask ... how is the blood getting into the spine if the PPMS people don't even have the veins?


In my case, I had a narrowing of a valve at the junction of the brachiocephalic vein which was causing blood to reflux into the azygos system. The azygos vein was okay -- the blood which was supposed to be flowing from the left jugular into the superior vena cava was getting slowed at the valve and then refluxing into the azygos system.

We have seen images of super highway collateral systems. Why would the blood not be refluxing back through the collaterals towards the spine?
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Postby fogdweller » Sat Jan 30, 2010 12:28 pm

Cheerleader wrote: There is so much we still don't know about the long term benefits of relieving CCSVI. My husband still has neuropathic pain in his legs, and we think that's from the large lesion on his cervical spine. His cerebral issues (brain fog/fatigue) are so much better. We think it's because the spine is less forgiving of nerve damage than the brain, since there's less plasticity and less material to recruit for rerouting...but we really don't know. [There is so much we still don't know about the long term benefits of relieving CCSVI. My husband still has neuropathic pain in his legs, and we think that's from the large lesion on his cervical spine. His cerebral issues (brain fog/fatigue) are so much better. We think it's because the spine is less forgiving of nerve damage than the brain, since there's less plasticity and less material
to recruit for rerouting...but we really don't know. [/quote]

That was my thought too. I live in the SF area, and we have the California Institute for Regenerative Medicine (CIRM) which we in Cal funded for 3 billion which hopefully will help neurologic repair and regeneration, but that work is pretty nacent, and I am in my late 50's so who knows 10 years ago, with my slow progression, a halt to progression would have been alost as good as a cure, but now not so much.[/quote]
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Postby livabird » Tue Jun 22, 2010 12:54 pm

Fogdweller i can answer your question about neuropathic pain i think. i have had ppms for 30 years i was treated in april i suffered opti neuritis and trigeminal neuralgia no great results but pain is gone and eyesight improved. i suffered horrible pain for years.

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Postby fogdweller » Tue Jun 22, 2010 1:12 pm

livabird wrote:Fogdweller i can answer your question about neuropathic pain i think. i have had ppms for 30 years i was treated in april i suffered opti neuritis and trigeminal neuralgia no great results but pain is gone and eyesight improved. i suffered horrible pain for years.

Liva


It is always good to hear about positive results like this.

Now we just have to get someone willing and able to do the surgery. Angioplastic intervention is not dangerous or at all, and is done in all kinds of situations. Somehow, for MS, we are being blocked from all angles. Dr. Scalfani, who has a very helpful and interesting thread going in this forum, was just denied permission to perform that surgery by his IRB today. Cited the National MS Society as part of the basis!!!
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Postby livabird » Tue Jun 22, 2010 1:21 pm

Unfortunately i think i may need another treatment as i think my adygos veins are blocked yes strangely i have 2 dr. simka had never seen that before.
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