Heard Back from the NIH

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

Postby marcstck » Fri Aug 28, 2009 5:24 pm

mrhodes40 wrote:Wow Marc just as a recap of the opinions you've had on these CT scans are now 2 people saying normal including the original radiologist and a family friend MD, Dr Dake saying narrow and it is a fixable problem, now the NIH doc coming in saying narrow esp on the right and yes right at the damaged area, but probably not a good area for repair.

I am glad there is so much debate on the issue, that is good for all of us!


Just to be clear, the only radiologist that found things to be "normal" was the initial radiologist who read my scans, who wasn't aware that he should be looking at the upper jugulars. The "family friend" neurologist, as well as the NIH neurologist, identified my left internal jugular as being significantly narrowed, and Dr. Dake's impression was that both the left and right were significantly narrowed, although the left was more so.

Both the "family friend" and the NIH radiologists recommended against stenting (at least as of now), whereas Dr. Dake recommended stenting both veins...
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Postby marcstck » Fri Aug 28, 2009 5:30 pm

Jamie wrote:In my opinion if he has the blockages he has MS.


Not to be argumentative, but that's taking a far too simplistic look at things. It's very likely that what we call MS is actually a collection of several different diseases, which all share some common symptom and diagnostic profiles. This disease is extremely heterogeneous, and the best explanation for the heterogeneity is that what we are actually dealing with is a syndrome, not a disease.

This holds especially true for PPMS, which differs from the more common forms of the disease in some very significant ways. PPMS patients generally have far less lesion load, are much more likely to have spinal lesions, are less likely to have positive CFS results, and generally acquire disability more quickly. In addition, the disease tends to strike at a later age, and hits males and females in equal numbers. None of the "accepted" MS therapies have any effect whatsoever on PPMS...

There are many notable neurologist who consider PPMS to be a completely separate disease...
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Postby cheerleader » Fri Aug 28, 2009 6:24 pm

marcstck wrote: None of the "accepted" MS therapies have any effect whatsoever on PPMS...


You know this all too well, Marc. This is one of my questions for the doctors- how CCSVI treatment is or is not affecting PPMS. We have a new poster here, GiCi- a 63 yr. old Italian cardiac surgeon who was treated by Dr. Zamboni two years ago, and calls himself "chronic progressive" - not sure if he means SPMS. He believes the ballooning slowed down his progression and gave him symptom relief. Here's his first post in case you missed it-
http://www.thisisms.com/ftopict-7894.html
I'm looking forward to meeting him soon-
more to come,
cheer
Last edited by cheerleader on Fri Aug 28, 2009 6:27 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Jamie » Fri Aug 28, 2009 6:24 pm

Yeah, you're probably right!
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Postby marcstck » Fri Aug 28, 2009 6:36 pm

cheerleader wrote:
marcstck wrote: None of the "accepted" MS therapies have any effect whatsoever on PPMS...


You know this all too well, Marc. This is one of my questions for the doctors- how CCSVI treatment is or is not affecting PPMS. We have a new poster here, GiCi- a 63 yr. old Italian cardiac surgeon who was treated by Dr. Zamboni two years ago, and calls himself "chronic progressive" - not sure if he means SPMS. He believes the ballooning slowed down his progression and gave him symptom relief. Here's his first post in case you missed it-
http://www.thisisms.com/ftopict-7894.html
I'm looking forward to meeting him soon-
more to come,
cheer


Thanks, cheer, I have read that gentleman's posts with great interest. Interestingly, the NIH Dr. told me that ballooning of vein would most likely not have lasting effect, because the veins have so much plasticity. Unlike arteries, which are stiff and would remain "open" after a balloon procedure, veins would be much more likely to simply close back up once the balloon was removed.

She used the procedure for taking a common blood test as an example. A tourniquet is placed on the upper forearm, and the veins below it balloon outward, thereby making it easy to draw blood from one of those veins. After the tourniquet is released, the veins then quickly close back down to their original size. The NIH neuro explained that this is similar to what would be expected to happen to of vein that underwent a balloon angioplasty...
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Postby Lyon » Fri Aug 28, 2009 6:57 pm

.
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Postby Jamie » Sat Aug 29, 2009 8:13 am

Marc that is something Dake said to me, veins will snap back.

Hence the stenting.

Dake's advanced stents weren't available to Zamboni though.
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Postby zap » Wed Sep 30, 2009 9:19 pm

Any updates Marc?
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Postby CureIous » Wed Sep 30, 2009 9:28 pm

zap wrote:Any updates Marc?
lol. He was just the person I was thinking about with the NIH post too, our NIH insider! Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby bestadmom » Thu Oct 01, 2009 4:47 am

I thought of Marc too. I read about it in the NY Times. I hope they have an interest in CCSVI and push for some research money.

Michelle
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Postby marcstck » Thu Oct 01, 2009 6:17 pm

I'm still waiting to hear back from the NIH neurologist regarding her investigations into my jugular stenosis. The last time I spoke to her, about four weeks ago, she told me she was going to reach out to different researchers and doctors at the NIH, in addition to experts outside of the facility, including some at Johns Hopkins. She said she'd be back to me within two or three weeks.

I've been waiting patiently (well, not that patiently) to hear back from her, and I finally tried to reach her this past Tuesday. She didn't get back to me, and when I tried to call her today they told me she was not in. This is very unusual, as she's always been very responsive in the past.

I'm scheduled to go back down to the NIH for some more work ups on October 18 (a lumbar puncture and lymphopherisis, primarily for their research purposes), so at the latest I'll be able to follow up with her on the CCSVI subject than. I expect she'll get back to me before then, though, if not tomorrow then early next week.

I'm hoping that the delay means that there are people taking this seriously, and try to come up with a plan...
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Postby cheerleader » Thu Oct 01, 2009 7:07 pm

Sorry it's taking awhile, Marc. I'm sure there's a logical explanation...but that doesn't make the waiting any easier.

I had a good talk with Dr. Dake in Bologna about all of this. He thinks it's going to take a very long time for the medical community to adjust to this paradigm shift and to seriously consider jugular/azygos stenosis part of the MS process. Not that folks are incredulous....just that the research and clinical trials needed to convince doctors this is verifiable really aren't there yet.

CCSVI makes sense to us, the caretakers and patients, but Dake reminded me that's not how medicine evolves. I just assumed that doctors would jump up and down and want to study CCSVI and be as excited as I was (and Dr. Dake was) when we saw Jeff's MRV, and his subsequent improvement after stents. But they're not. And for folks who would like some answers, it's incredibly frustrating.

Anyhoo...I hope you hear something soon, and thanks for sharing the update with us.
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureIous » Sat Oct 03, 2009 10:32 am

cheerleader wrote:Sorry it's taking awhile, Marc. I'm sure there's a logical explanation...but that doesn't make the waiting any easier.

I had a good talk with Dr. Dake in Bologna about all of this. He thinks it's going to take a very long time for the medical community to adjust to this paradigm shift and to seriously consider jugular/azygos stenosis part of the MS process. Not that folks are incredulous....just that the research and clinical trials needed to convince doctors this is verifiable really aren't there yet.

CCSVI makes sense to us, the caretakers and patients, but Dake reminded me that's not how medicine evolves. I just assumed that doctors would jump up and down and want to study CCSVI and be as excited as I was (and Dr. Dake was) when we saw Jeff's MRV, and his subsequent improvement after stents. But they're not. And for folks who would like some answers, it's incredibly frustrating.

Anyhoo...I hope you hear something soon, and thanks for sharing the update with us.
best,
cheer



Couldn't agree more on the realistic nature of your post. Marginialization, and cult-status are the order of the day, for now. This would never have happened pre-internet, at least not in it's present form. It's unique in that it is truly patient driven from the outset, save our Italian friends. The way I see it, there are ONLY about 400,000 (surely more) MS patients in the US. This thread/board and it's copious references and testimonies has certainly reached into the 1,000's and is growing daily. The weight of ALL participants is needed or that inertia will be lost. For us MS sufferers that clearly understood the risk, and were willing to endure such risk, for the sake of relief and to further the cause, there's a lot at stake both pro and con.

Grassroots are all the rage now, but we aren't carrying signs, just our bodies.

Since we know that high science is going to do what it does best, change, in as slow and methodical a fashion as is humanly possible, there remains just one option, to continue pressing on and encourage others to do just that, should they also find the weight of ALL the evidence pointing in a certain direction.


Since not even lesion load +/- will distinctly "prove" anything, hopefully at some point the SWI will be used pre-op and post-op to show iron accumulation or lack thereof.

M.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby CNClear » Sat Oct 03, 2009 5:16 pm

Why has no one ever updated the number of people in the US with MS??

It was 400,000 thirty years ago! I have seen it ramped up since then, but only in a couple of rather obscure papers/articles, whatever it was...but even the MS Society still uses 400,000...???

Either we die off and are diagnosed in a really remarkable symmetrical pattern...or no one has ever thought to update the numbers???

Or is there a third alternative? Something I am definitely missing?

Really, after 30 years ?????

Lisa
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Postby CureIous » Sat Oct 03, 2009 5:28 pm

CNClear wrote:Why has no one ever updated the number of people in the US with MS??

It was 400,000 thirty years ago! I have seen it ramped up since then, but only in a couple of rather obscure papers/articles, whatever it was...but even the MS Society still uses 400,000...???

Either we die off and are diagnosed in a really remarkable symmetrical pattern...or no one has ever thought to update the numbers???

Or is there a third alternative? Something I am definitely missing?

Really, after 30 years ?????

Lisa


Yeah, I would definitely toss a caveat at that number...

Word of mouth can do incredible things, just ask any MLM person! lol.

Thanks for your posting on the clinical trials etc. I think we can all settle in for the long haul in the "jury is out" department.

Luckily, has zero effect on what we can do to help others in the here and now, with information and let them decide. In fact I'm going to go email one right now that was a friend of a friend just to give em the skinny. :)

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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