CCSVI skeptics

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

Postby Loobie » Tue Aug 25, 2009 7:35 am

And once again, someone show me something that you can find in common, besides this and symptomatic expression, between RR, SP and PP. I haven't been able to find it. I think that's where all gets lost. To date we have four "main" therapies for MS and they're all for RR. Since I'm considered SP by some and not by others and the drugs are ineffective on me, right now this is simply what I'm trying. It's what we all did. Trying is the key word. This isn't like an appendectomy where the results from the procedure are well documented. We are providing those results for the first time.

I would do anything to have the time to wait for "definite". I just don't have it and this made sense. So do I care that it's not 100% proven out yet and the next best thing since sliced bread? Not at all. We should maybe look at the patient's motivation instead of who's right. Personally I really don't care who's right in this, only that my motivation is understood. Having a plan and executing it is the only way anything ever gets accomplished. Do we wait until we know without a doubt that the results will be 100% before we do it?

That leads me to my most used saying at work: Don't let best get in the way of better. So many people want to let well enough alone because it isn't the panacea to the problem. I just like improving. Every at bat does not need to be a known home run for me to step to the plate.
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Postby catfreak » Tue Aug 25, 2009 10:54 am

Well said Lew!

It's not about right and wrong. It is about personal decisions. I am willing to go ahead and try it. To me taking any of the CRABS, Tysabri, LDN, Revimmune, Campath etc is a personal decision about the future of ones health and quality of life.

I will not beat down someone who wants to wait and see, I was a wait and see'er until I started feeling like crap again and have a headache that has lasted for 3 months and feeling like a moron when I try to carry on an intelligent conversation and strange words come out of my mouth. I get looked at like a freak when the words don't even have a place in the conversation or are inappropriate. I think through what I am going to say and it comes out totally different. I forget how do to simple tasks that I have just done minutes before. My whole body jerks in tiny motions that no one else sees and I can't spend more than 5 minutes outside before I an down for the count.

I will not beat down someone who disagrees with CCSVI completely because that is their choice just as I have made my choice.

OK, I am done.

Cat
Last edited by catfreak on Tue Aug 25, 2009 11:23 am, edited 1 time in total.
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby bestadmom » Tue Aug 25, 2009 11:09 am

Lew,

I love your attitude.
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Postby Sharon » Tue Aug 25, 2009 11:20 am

Good post Lew

There are some people who just cannot make a decision. I do not care if it has to do with their health, or what movie they choose to go see. That's okay for them..not for me...I need resolution---

Cheer, I am hearing by third party, that Dr. D. has decided to scrap the Ultrasounds. I know that when I was out there for the follow-up, he mentioned the Ultrasounds were not giving him any "new" information. As I said, this is third party information; I have not spoken with Dr. D. himself.

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Postby catfreak » Tue Aug 25, 2009 11:27 am

Sharon,

I got my orders yesterday and I am having:

1) Labs drawn

2) MRI/MRV (head, neck and chest)

3) VSC Venous Ultrasound

4) Consult with Dr D.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Loobie » Tue Aug 25, 2009 11:35 am

Sharon wrote:Cheer, I am hearing by third party, that Dr. D. has decided to scrap the Ultrasounds. I know that when I was out there for the follow-up, he mentioned the Ultrasounds were not giving him any "new" information. As I said, this is third party information; I have not spoken with Dr. D. himself.

Sharon


That's cool with me. I don't even remember discussing that part of the test with Dr. Dake. It was just another thing I had to do that day!
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Postby Sharon » Tue Aug 25, 2009 11:43 am

Cat -

Okay, so he is still using the Ultrasounds for the newbies. Maybe he isn't for the follow-up appointments.

Sharon
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Postby CureOrBust » Wed Aug 26, 2009 2:30 am

cheerleader wrote:Just to clarify on the whole doppler issue- since there seems to be some confusion....and we were the first and I asked why....

Stanford is not following the Zamboni protocol. They do not use a transcranial doppler, since the university med center doesn't have one readily available. .... If Jeff had had a TCD, they would have seen reflux into his brain ... Dr. D is trying to show that the usual American university doppler measures of neck alone may miss the stenosis and reflux, and it has in all the people who have presented high like Jeff: Marie, Mel, etc.
Thanks a lot, this really explains why Dr Dake is not getting the doppler results (since he isn't even trying).

cheerleader wrote:Dr. D contends that the real way to find stenosis is to do MRV
Zamboni found "membraneous obstruction of the outlet into the superior vena cava and proximal atresia". To me, a "membraneous" thing would/could be very thin, and therefore possibly not show up on an MRV? I do not know. :? The papers produced by Zamboni reference blood flow patterns being wrong. I therefore see it as possible, that the veins are not narrowed, but may still have a flow abnormality. From what I have personally seen of doppler and MRV, is that the dopplers are more centred on the blood flow within the vein, while the MRV presents the structural "shape"/integrity of the vein. Different measures, can / will produce different results. Please understand, I think I do understand (and applaud) DR Dakes position on the significance of an MRV, especially before surgery.

cheerleader wrote:....he is not working for Zamboni or "aligning" with Zamboni (he was working for me and Jeff, now others), he is taking Zamboni's research and doing it his way, which he believes will work better in the states, remove the doppler tests and save on insurance costs by going straight to MRV.
I hope I never gave the impression that I though Dr Dake was "working for" Zamboni :oops: , I simply meant I would of thought they would share information more freely.

cheerleader wrote:Don't get hung up on the tests, Cure. The thing in common is that they have found stenosis and reflux in every MS patient they have tested.
Dr Dake is great in that he is treating patients NOW. However, he has yet to publish his findings, so the "best" standards we have right now are Zamboni's tests. 100% concordance is just too good not to get "hung up" about. and if I am not mistaken, they (as in both) have not found stenosis & reflux in every MS patient they have tested; From my current understanding, Dr Dake did not find something to fix in two patients, one being "islandgirl".

cheerleader wrote:The results are the same.
The results are not "the same", as Dr Dake has found someone that was outside his bell curve, while Zamboni has not (in any of his published material thus far)

This IS the sceptics thread :) and I think it is important to play devils advocate.
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Postby Sharon » Wed Aug 26, 2009 6:21 am

Cure -
My MRI/MRV showed a stenosis in the left jugular vein. When Dr. D. placed the first stent in my vein, the pressure gradient did not change. With a venogram, he could see that my blood was still not flowing correctly. He then looked at the right jugular, then to the asygous---he found nothing. He then went back to the left jugular and found
Repeat venography of the left jugular system demonstrates a valve at the junction with left brachiocephalic vein with narrowed segments inferior to the stented segment. After placement of stent in this location and venoplasty, the pressure gradient improved from mean values ranging from 3-4 to mean value ranging from 1-2, with relief of narrowing.

Cure, Dr. D. did not see the narrowed segments of the valve with the MRV...he did see the reflux. In the operating room, with the venogram he was able to find the additional narrowing.

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Postby Rokkit » Wed Aug 26, 2009 7:59 am

Sharon wrote:Cure, Dr. D. did not see the narrowed segments of the valve with the MRV...he did see the reflux. In the operating room, with the venogram he was able to find the additional narrowing.


Zamboni said the membranous obstruction in the azygos vein could be opened with a balloon and that the problem did not recur. Is it safe to assume Dr D would be finding that problem with the venogram? I haven't heard anyone say he fixed anything with a balloon, always a stent. I'm still bothered by why Zamboni saw azygos problems in 86%, and Dr D has only treated one azygos that I know of.

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Postby Loobie » Wed Aug 26, 2009 8:37 am

We will be talking at length about that when I go back out.
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Postby Sharon » Wed Aug 26, 2009 10:20 am

Rokkit

Dr. D opened my left jugular with a balloon...when the balloon was taken out the vein collapsed. He did the same with Jeff, and I would imagine Marie since we were the first on the operating table. Cheer has posted that Jeff's collapsed also.

I'm still bothered by why Zamboni saw azygos problems in 86%, and Dr D has only treated one azygos that I know of.

Let's see if the question is answered in a couple of weeks in Bologna.

Dr. D treated Holly with the asygos. Lew is going back for follow-up and is looking at a possible asygos. Again, let me remind you that Dr. D has modified some of his protocol since his first procedure with Jeff and is continuing to modify whether it be testing, procedure or follow-up medication. I know for a fact the MRI/MRV testing has changed because my follow-up technician was instrumental in changing the parameters for Dr. D..

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Postby Loobie » Wed Aug 26, 2009 10:26 am

And the best change is that you don't have to fast for 24 hours prior to the MRV! I was staying at a good friend's house and they can cook. Just ask Randi when we met up and she came over. The smells from the cooking had her sitting outside! That really sucked for those of us with constipation issues. not eating for 24 hours and then not even drinking for 12 during the day that day. I got all out of sorts in my elimination systems.
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Postby catfreak » Wed Aug 26, 2009 10:54 am

Woo Hoo!! No Fasting before test!! Only before procedure and I am scheduled for 9 AM procedure.

This time next week I will be sitting with Dr D and discussing test results!!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Loobie » Wed Aug 26, 2009 11:06 am

You can still eat the night before the procedure, but not the morning of. It was the 24 hour fast before the MRV that got me!
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