This Is MS Multiple Sclerosis Community: Knowledge & Support

Having seen it on the computer last month, and having it explained in person was very helpful. We got the full 3D/360 deg. images of folks with "the pancake effect", and the closure was obvious. But we're fortunate Dr. D is our local doc- it may be difficult to do this long distance.
cheer

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

I sent Dr. D. an email asking about getting testing in my area before I come to Stanford. He said that some people have done that (well actually he only gave one example from a person who flew in from Australia) and he said it turned out to be a complete disaster. So he recommended just doing it with him.

I was a little suspicious of this. Does he want to do it himself so he can keep track of all the anomalies he is discovering in MS-ers, like fluffing the statistics? Or perhaps he truly knows what he looking for and it is difficult to find since people have never looked for it before? I'm assuming if he did NOT find something he would not advocate surgery and simply keep a record that he found a MS-er without the vascular defect? I guess you have to trust the doctor's ethics and good judgment.

But like others I am still wondering why he is seeing evidence of this but other radiologists are not. Cheer mentioned it has to do with the viewing angle. Are other docs. looking at the tests and not rotating the images? Or do they truly not see something? There have been multiple studies done on interpretations by radiologists and how if you are looking for something you can always find it and conversely how if you are looking for something you may completely miss something else.

No one flew in from Australia...Cure had his MRV sent (Dr. D showed it to us along with others when we were there last) and it was polluted with arteries and unreadable. Dr. D felt really bad about it- he wanted to help Cure. The reason he wants to do the scans? Because he's good, and knows how to do venous scans correctly...it's not easy to isolate the veins necessary without "arterial pollution."

No one is trying to fluff research. This is the most successful cardio endovascular doc in the states. He doesn't need this...not for money or fame...he has both already. I approached him to help my husband, and he did. He read Zamboni's research and was intrigued. He decided to test Jeff after meeting Dr. Zamboni in London and hearing his presentation. We all saw Jeff's crimped jugulars clearly on the MRV, along with all the collateral veins. It was a terrific, clear scan. Jeff was outside for four hours limbing up trees in 95 deg. heat today. He thanks me everyday for putting this together for him.

Be suspicious, that's fine. Get other opinions, of course! Find local doctors, please do!
cheer

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

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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

Okay, I made a mistake on Australia. I must have misread Dr. Drake's email. I do know that one of the neurologists on the program in Bologna said at this point it is a hypothesis only with no extensive evidence or consistent way of proving it. Maybe he has been invited to play devil's advocate a bit. He did add he hoped we would have an answer in the near future.

Regardless, I think it is healthy to be skeptical. Being your own patient advocate inevitably involves this. Each person has to synthesize as much info as they can locate from various sources and then make their own decision. I have decided I'm willing to bank on it stopping progression. But I'm not looking for a miracle.

I'm going to be seeing my pcp tomorrow, but once he heard that dr. dake was contradicting the local radiologist, my pcp has been something of a prick. He suggested that I call Dr. Dake and get him to phone the local radiologist directly, which is a ridiculous request. The local radiologist doesn't know dr. dake from boo, will have no idea what he's talking about, and last looked at my ct scan about a month ago, probably for all of five minutes.

I might just go to the hospital and demand to speak to the original radiologist myself. Certainly, I must have some rights as a patient. The fact that i'm in a 300 pound power wheelchair will make it very hard for them to throw me out, and i can be a loudmouth, wise ass New yorker with the best of them...

I'm scheduled to go down to the NIH in two weeks anyway, and they promised to read my CT scans down in Bethesda. I have total confidence in them, they have no agenda other than pure research, and I'm sure their radiologists, like every other doctors/tech that I've encountered down there, will be top-notch.

In the meantime, I might try to seek out another interventional radiologist here in New York, just look at the scans. I do find it a bit suspicious that Dr. Dake is seeing such dramatic occlusion, and yet the initial radiologist missed it. Still, I've had radiologists misread scans of various types before, so it's certainly not beyond the realm of possibility that Dr. Dake is in the right. I'm going to make damn sure, though, before I fly out to Stanford and have stents implanted...

After nearly 7 years as an MS patient, I've learned that getting a second, and even third, opinion is mandatory, especially on issues of such great importance...

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Marc
www.wheelchairkamikaze.com

OK, My ears are burning. I think the BIG failure of my scan was that the neurologist only scheduled me in to have my head done only (ie nothing below my neck). Another "failure", which I think contributed to the "noise", is that because it was done as part of the "research", they could not use the shiny Govt bought 3T MRI, so I was MRV'd on an (old? & rickety?) 1.5T machine, that was paid for by research funding.

The actual scans from what I could gather, are programmed (ie a programme is selected) into the machine, so I would GUESS the "operator" does not have much effect during the actual scans. However, reading the scans that come out (if the correct programme is selected) is where I THINK the "art" really comes in.

On my scans (which were only of the head and a little neck) Dr D noted (and I could also easily see it, now that he mentioned it, I now assume it isn't "normal") there was an asymmetry to my jugulars. If a radiologist simply uses the "printed" images on one of those light-board-thingy's, they will easily miss what Dr Dake is seeing. You really need to use the 3D rotating output you get from a scan. I think anyway. I personally will be expecting to have any abnormality fully explained to me, so that I can explain it to other Dr's (ie second opinion)

I am not sure what Dr D showed you (I feel so violated ) but the disk I sent him had MANY scans on it of various types, When I first looked, I only saw the ones with the arteries, but then later found some that were much clearer of the vascular system.

This is from the Bologna program:

"The Meeting is meant to take a completely different approach
from the usual medical congresses.
It will be a cenaculum, a small gathering of experts where those
that have studied the disease will submit unimaginable scientific
evidence to the others, leaving much room to criticism from as
well as confrontation and discussion with the participants."

Rokkit

That's how this should be.

Man, I'd pay a million bucks to attend that.*


















*. note to self, make a million bucks.

While I too would feel better going into stent surgery knowing that other docs can also see these blockages, I am reminded of phrase that I often see come up in medical literature - "high clinical suspicion," often mentioned in the context of how some conditions are rarely diagnosed unless the treating physician has a high degree of clinical suspicion.

So while it may be true that Dr Dake sees these occlusions because he is looking for (and even expecting) them, that doesn't necessarily mean that this bias will led him toward error.

Along the same lines, why did Dr. Zamboni see azygous vein obstructions in 86% of cases, while Dr. Dake hasn't seen anywhere near this rate?