This Is MS Multiple Sclerosis Community: Knowledge & Support

Can't believe you had an answer to that one! I wasn't sure it would be possible. Phe, I hope you are able to go with Dr. Sclafani or someone else who can treat you in this way. They don't call them innovational radiologists for nothing.

cece
that would be the logical approach to that problem. However no guarantee it would work because the anatomy is always a problematic and challenging. but always worth a shot, especially for someone who needs help as much as the author of the note.

cece
that would be the logical approach to that problem. However no guarantee it would work because the anatomy is always a problematic and challenging. but always worth a shot, especially for someone who needs help as much as the author of the post.

Was there a reason behind choosing the left jugular over the right jugular to be punctured?

I agree, it's worth the shot.

There have been dissections of cadavers to look at these veins. There are also veins that have been removed surgically.

Would you like to see one?




The image on the left is a internal jugular vein excised from a patient with multiple sclerosis.

You can see how closely the venogram resembles in some ways the anatomical specimen.

The yellow straight arrow shows a narrowing of the vein. There is no scar tissue at all. The curved orange arrow points to the abnormal valve.

Yes, it is possible to donate your body to science upon your demise.



The patient had upside down valves resected.[/img]

I think that the angle may be a bit better suited for upward direction of the catheter to the other side.
however either side might be a problem.

Then I would consider bilateral downward jugular punctures and direct treatments.

After treatment, with the CCSVI corrected, your body might not be as much use for CCSVI research! I prefer this course of action personally.

Dr. Sclafani, I sometimes think we've covered everything, then we hit new ground like those pics. (but where is a squeamish emoticon when I need one!)

Have to agree with Cece on the graphic, but its real!
I have recently watched a very good forum by Dr. George Jelinek the writer of several books on MS and a research publisher from Australia, he also has MS.
See the talk at http://www.msakl.org.nz/.
"Professor Jelinek was invited to present the Keynote Address to the Focus on MS Conference run by the MS Society of New Zealand on Saturday 18th September 2010. He chose to discuss the value of medical evidence, what weight researchers put on various trials, and how bias and conflict of interest can influence the results of these studies. The talk particularly focuses on drug-company sponsored research, and the often hidden or unreported flaws in clinical trials that raise questions about the real efficacy of some of the currently used disease-modifying medications. This is an important talk for those of us wishing to get a really balanced perspective on the treatment options for MS, rather than blindly following a drug-only approach."
The whole video is worth looking at, it is 1.5 hour long. I think it is valuable information if you are to design studies for CCSVI treatments.
Most of the video is about the flaws and biases in RCT research, mostly by Pharmaceutic Industry to sell there products. Very, very good content.
The very end has a comment he made about CCSVI angio problems from stretching veins that in his words has been known about for some time as a problem in angio treatments having restenosis.
Can you comment on the 'known' complication of restenosis after angio that he speaks briefly about please.
Regards Nigel

Dear Doctor,

I am wondering, but have been reticent to ask - lest I have missed a previous Q & A - what is an "incompetent valve"? Is it a generic term that would cover inverted valves, fused leaflets, etc., or is it a more specific pathology?

In my second round, a Doppler US revealed "incompetent valves" and the venogram suggested stent (declined), then a cutting balloon, but cutting balloons apparently don't come as large as the 18 mm required for my LIJV. What, if anything, might I infer from this limited information? Would an incompetent valve fall into congenital malformation, or could there be another antagonist?

Thank you, sir.

_________________
My name is not really Johnson. MSed up since 1993

That is fascinating.

My question results from that (and, again, I'm sure it's one that has been asked and answered several times).

What constitutes a clinical narrowing? (maybe those are the wrong words) ... but if a vein is narrowed 20% ... would you balloon it if there was potential reversed flow?

Are valves the main issue? - and if so, does running a guide wire through the veins pose any issues with moving them and not being able to see accurately what is happening then?

Do you think there could be potentially any IVC issues, or have you seen any, related to CCSVI? (I know that's not part of the theory, but has anyone looked?) I have no reason to suggest there may be ... I just wonder.

Hello Dr Sclafani, Thanks for being such a rebel!
Its not an easy place to be... but it will get better.

My question concerns Endothelin 1. I am an RN ( x 38 years) with a good handle on anatomy and physiology. My interest is in the function of Endothelin 1.

It is my undertsnading that Endothelin 1 is made by all people to maintain the health of the lining of our vessels. It is also my understading that increased shear stress and hypoxia are triggers that increase production of Endothelin 1- I am guessing its the bodies way to reinforce the vessel intergrity.

I have learned that Endothelin 1 in high levels can increase fibrosis( fibrotic changes) and hypertrophy (thickening) of the vessels/valves. So IF the person is born with this congenital condition , say at a minor blockage in early life and then over time, with shear stress and hypoxia as triggers the Endothelin levels soar and the CCSVI lesions/vessel get worse.......then the shear stress and hypoxia get worse etc etc

Its sort of a cycle....over many years the vessels would be stiffer, stenosis could be worsening and valves could be thickened and more of a blockage. Of course all of this would cause more iron to be laid down in the parenchyma too doing its own bit to contribute to damage. The iron and hypoxemia and hypogylcemia in the brain leading to axonal and oligodendrocyte damage and maybe even cell death. Could the extremely high Endothelin levels cause the venocentric MS lesion formation ( sort of like sandbagging the walls?) And the WBCs be chrochically activated as the "clean up crew"?

Its my undertsnading that pwMS have a much higher ( hundred times higher)than normal Endothelin 1 level. After successful PTA would the Endothelin level 1 drop because their triggers are gone?? How long does that take? Would the fibrotic and hypertrophic changes decrease? Are there people studying this?

Sorry to blast you with so many questions but I don't know who to ask these questions of.

Thanks in advance and I will totally understand if the answer is "we don't know yet"

Cat

The Mom that got her daughter liberated 1 month after CIS diagnosis

_________________
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

MegansMom, I am happy to see you in here, I think you're onto something with your endothelin research. Can't wait for the "iconoclast from Brooklyn" to weigh in on it.

Greetings. I have one additional thought to pass on to phe if phe is still reading or interested. Your situation sounds painful and challenging. I have no idea if this is your issue, but it made me think of something similar that happens to me called dystonia. If your doctor has never investigated dystonia you might find this useful.

Some dystonias can be treated with botox injections. For instance, I had botox injections in my peroneus longus muscles and this made a huge difference so I stopped getting spasms in my ankles (in which my feet would stick out). The spasms can be triggered by movement, which is what made me think of you.

I have the same thing in other body parts, and I found that after having a procedure done this summer I was amazed that this symptom was relieved for a period of time. The relief in my tongue was immediate. I have had partial return but I thought I would pass this on because if this is the same thing then botox might help you, and it might be encouraging if you knew there was a chance a procedure could help.

Best of everything, and I hope this could also help Dr. Sclafani to know of yet another possible tool for the toolbelt!

Editing to add one other thought -- what grabbed my attention in the first place was how I could sympathize because I have so much trouble having dental work because I can't hold still; there needs to be someone else there just to keep me "smoothed out" because whatever they do makes me clench up. But the meds for the procedure were very relaxing. I was afraid I couldn't handle it and the venogram went fine. Much easier than dental work.

Does it have to be done on a flat table? Is there any way to use something like an angled bed or even something like a procedure "chair" that could accommodate a person who had trouble being flat? Thinking creatively here. I guess that wouldn't work with the specialized equipment?

Dr. Sclafani, thank you for the info.

Hi bluesky, the only way I can have any dental work done, including routine cleanings, is with conscious sedation which several dentists in my area offer. Perhaps you could try locating such a dentist in your area. The only stickler is that driving afterward is not allowed.