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

And now, vascular societies

Postby frodo » Fri Apr 09, 2010 1:53 pm

Now vascular societies.

This people focuses more in arteries than veins, but is promising. And the most important is that they are quite well organiced and centraliced. And besides, this people should have data for both sonographers and surgeons.

There are millions of national societies. I put only the international ones that link to the others.

The "World Federation of Vascular Societies"
http://www.wfvs.org/

International society of endovascular specialists
http://www.isesonline.org/

International society for vascular surgery
http://www.isvs.com/

International uni0n of angiology
http://www.i.u.angiology.org/contacts.php
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Postby Liber8 » Mon Apr 12, 2010 7:26 am

Open mouth insert foot. I posted awhile back on here about what a joke it was trying to find a Dr to do a scan.

Well I went to my GP advised him of all the studies and where they were. I told him I was going to have this scanned here or overseas if he wouldnt do it. He referred me to an IR he knows that likes looking into new things. He got back to me after about a month(vacation) and I go in the 22nd of april. It looks like he only wants to do a doppler but it's something.

I still hold my position that if you have the resources go somewhere where they know what they are doing. I may get a scan but I doubt he has figured out exactly what he is looking for and the best way to find it. And yes I sent the protocols. Also There is no way he will do the intervention.

At my appt I will ask him if it is ok to leak his ID so others can see him. I will also have a better idea of if he knows what he is doing.
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Postby tzootsi » Mon Apr 12, 2010 8:32 am

Liber8 wrote:Open mouth insert foot. I posted awhile back on here about what a joke it was trying to find a Dr to do a scan.

Well I went to my GP advised him of all the studies and where they were. I told him I was going to have this scanned here or overseas if he wouldnt do it. He referred me to an IR he knows that likes looking into new things. He got back to me after about a month(vacation) and I go in the 22nd of april. It looks like he only wants to do a doppler but it's something.

I still hold my position that if you have the resources go somewhere where they know what they are doing. I may get a scan but I doubt he has figured out exactly what he is looking for and the best way to find it. And yes I sent the protocols. Also There is no way he will do the intervention.

At my appt I will ask him if it is ok to leak his ID so others can see him. I will also have a better idea of if he knows what he is doing.


It's great that you are going to see an IR. However, if he finds a problem, I can't imagine why he wouldn't want to fix it. The ballooning is no big deal to these doctors, they do it all the time. My wife saw our local IR, he picked up the blockage on his doppler, and a few weeks later he ballooned both jugulars. He fixed a venous blockage - if it happens to help MS symptoms, all the better!

Just fyi - the doppler picked up reflux on the left jug, but when the venogram was done, he found both jugs had stenosis.
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reflux

Postby 1eye » Mon Apr 12, 2010 12:27 pm

I worry much more about the reflux. In stenosis the blood will slow down. In reflux the pressure may mean blood can actually be forced back into the brain. If it gets there under pressure, and is forced backward through the BBB, I would expect a lot more damage than from slowing perfusion. The reflux is not specifically addressed in this operation, except that opening jugulars may swamp it and the downward pressure reverse it again. Depends if your heartbeats are stronger than 1G! One person I read about here got sicker after a valve was cleared out (removed) so maybe during the heart-driven part of the cycle he has made his reflux worse! We need help, but we need it from cardiologists, as well as radiologists. It is a multi-systemic problem that might need a generalist's input.

Don't get me wrong. I am *not* saying stop getting operated on. This is the best we have done so far. The reflux may not be a problem if there is sufficient drainage to swamp it. Correct drainage can only help. But watch out when you are zapping stuff. You may make the problem worse. Those valves are there for a good reason (In this case, because you might swing from a branch, and have blood flow the wrong way into your brain.) One of my biggest problems is that if I bend down to pick up the soap or tie my shoes, I fall down and hurt myself. Maybe my valve has problems. If so, it should be fixed, if possible, but not removed altogether. It might be helping.

Get tested. Get treated. But encourage your radiologist/surgeon/cardiologist/GP to learn all they can, before and after. Ask every question you can think of. We really could know a lot more. But we haven't got time to wait for skeptics, accountants, or other nay-sayers to be convinced of the relationship between MS and CCSVI, which some *neurologists* are saying has not been proven. It is, it has been, and it will continue to be. In my profession we had expressions: ID-10T, FUBAR, and FOAD come to mind.

"If I only had a brain.
A heart.
Da noive." (Harburg?)
:)
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Postby Liber8 » Tue Apr 13, 2010 1:10 pm

well so far the plan is working. Just got off the phone with one of the rad techs that is going to be helping with my scan on the 22nd. She said that after I sent the protocols and all the very good info they decided they needed to talk with Drs at Stanford to make sure they were going to perform the scan correctly!!! I purposely sent them more protocols and research than they would be able to digest knowing that they would either have to cancel the scan because they didn't get it (most Drs are ego driven and want to find the answer and wont give up) or contact one of the places that is or had done the study.

I will be back in touch after April 22 or sooner if they pull the plug on it. I will make a point of it to ask if they want to see more patients. I will also give type of test details etc. Little do they know that there are about 400,000 people in the US with MS.

I do know that some insurance companies will ok a Doppler if the patient has headaches/migrains that are accompanied with dizzyness and or fog/confusion.
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Dissapointed

Postby Liber8 » Fri Apr 23, 2010 7:42 am

Well I had the Dopler scan with Dr Doug Ketcham at United Hospital in St Paul, MN yesterday. I think he works at St Paul Radiology also. He is a very experienced IR, 40 years.

Unfortunately his young assistant did the scanning while he was off on a liver biopsy. When I met the tech doing the scanning she said "This is going to be a huge learning surve for both of us". I had a good idea that nothing would be found after that statement. And basically nothing was. The tech had contacted Georgetown University and spoke with the tech there that does the scanning . All indications are that what was done was the same that is done at Georgetown. It was a Transcranial per the report. I think they find CCSVI in about 50% of there scans. Seeing how Dr Simka put it out there that after 250 patients his findings were 95%, I am not impressed with Georgetown.

I spoke with the Dr after and he does not sound too confident in CCSVI or he is just not that interested. He said he would take more patients but it did not sound as if he would be willing to perform the treatment. At one point he said, what would I do if we did find it? Ballooning would be ok but the vien would most likely restenos. And when you start talking stents a lot more comes into play.

It was about two hours. Most likely lack of experience with this played a lot into that. I personally would not go there again, but I am sure that they would have found a stenosis that is pronounced. They were very thorough, I just don't think they knew what they were looking for.

In closing, I personally will not be looking locally any more. In my opinion it is a waste of time and money. Not just thatbut because it is obviously found less by Drs new to it, it takes away from the validity behind the hypothysis. So the more new Drs trying to find CCSVI, the less the % will be when it is found.
Last edited by Liber8 on Fri Apr 23, 2010 8:34 pm, edited 1 time in total.
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Re: Dissapointed

Postby ndwannabe » Fri Apr 23, 2010 9:30 am

Liber8 wrote:In closing, I personally will not be looking locally any more. In my opinion it is a waste of time and money. Not just thatbut because it is obviously found less by Drs new to it, it takes away from the validity behind the hypothysis. So the more new Drs trying to find CCSVI, the less the % will be when it is found.


This is the exact feeling I am left with after trying the local doctors. No interest in the best case, smug ridiculing in the worst.

I am saving money for Poland. Might take a few years though :roll:
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Postby Liber8 » Fri Apr 23, 2010 8:44 pm

TRANSCRANIAL ULTRASOUND AND VENOUS ASSESSMENT OF THE NECK 4/22/2010

INDICATION: 39-year-old patient with MS. Question chronic cerebrospinal venous insufficiency (CCSVI). COMPARISON: None.
PROCEDURE: Transcranial duplex ultrasound was performed with the patient sitting and in the supine position. The outflow veins within the neck, including the internal jugular vein and vertebral veins were also assessed with the patient in a sitting position and supine. Studies performed in shallow breathing and Valsalva.
TRANSCRANIAL ULTRASOUND: The third ventricle measures 4.7-5.7 mm in size, which is normal for age. The periventricular vein, the vein of Galen, straight sinus, and confluence at the base of the skull showed normal flow pattern with no evidence for reflux.
Venous assessment of the jugular, innominate, and vertebral veins were normal. The valve at the lower portion of both common jugular veins are component, and there is no reflux. There is very minimal reflux seen in the left vertebral vein. However, this is a normal variant and not significant. The flow pattern within the neck veins is normal, and there is no evidence for obstruction or retrograde flow. The right lower internal jugular vein has a cross-sectional volume of 0.56 cubic cm in the supine position and 0.25 cubic cm in the sitting position. Left internal jugular vein in the supine position is 0.72 cubic cm, and in the upright position 0.12 cubic cm, which are normal.
CONCLUSION: Normal transcranial and cervical venous assessment showing no evidence for CCSVI.
/das


A couple things to point out: you see it says Comparison:NONE,very minimal reflux in left vertebral vein dismissed. I don't know if that's important or not

In the end I have seen numerous posts from people with negative Dopplers or MRVs only to go to Poland and find CCSVI.
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Postby Johnson » Fri Apr 23, 2010 10:09 pm

Liber8,

I believe that the "Comparison" allusion = the clinic that did your tests has no previous Doppler US reference for you - to compare with.

I believe (with a +/- 96% confidence rate) that if you have MS, you have CCSVI.

Unfortunately, I am not a doctor of medicine, and my belief is meaningless.
My name is not really Johnson. MSed up since 1993
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Postby Liber8 » Sat Apr 24, 2010 11:07 am

Johnson wrote:Liber8,

I believe that the "Comparison" allusion = the clinic that did your tests has no previous Doppler US reference for you - to compare with.

I believe (with a +/- 96% confidence rate) that if you have MS, you have CCSVI.

Unfortunately, I am not a doctor of medicine, and my belief is meaningless.


Thanks. Yeah your right it is rearding not having a previous scan on me. I have also believed that as testing improves that the % of people with MS that also have CCSVI will increase dramatically. Personally I think the only people that have been correctly diagnosed with MS and don't have CCSVI are so early on it may not show (maybe chlidren) or possibly they were not tested correctly. I guess a minor reflux that has built up over the years could be missed also.

I really wish that if you have clinically diagnosed MS they would test like Sclafani. Just go in with the cath, inject the dye and find/fix the problem.

I do question why you would need a comparison base line to go off of. Are they not just looking for blood flow issues? Not how does the blood flow compared to how it used to. I have had MS for 16 years. They would need a base line from 16 years ago if thats their angle on it. What a joke.
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