MS but not a single stenosis?! Help!

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

MS but not a single stenosis?! Help!

Postby Tim78 » Thu Oct 01, 2009 10:31 am

Hi to all from Germany!

I start reading this forum a few weeks ago and its great. I ever hoped to find a forum like this!

After reading the Zamboni papers and the posts of the luky ones who had been treaten by dr Dake, i i wanted to call him by myselfe and travel all the way to Stanford. But first i had the chance to get an MRV done here in Germany. This morning i was in the tube (a Siemens Magnetom 3 Tesla with the needed Syngo SWI software) for about 1 hour and a few minutes. Then all my hope was gone. I have no stenosis at all. Not in jugular veins not in the azygos, not in any vein at all. All in all 5000 pictures were made and of cause only at a few of them my doc i had a look.

If i understand the papers right (and my (medical) english is not the best) tjis result is impossible. There must be reflux caused by stenosis otherwise this would mean i have no ms?! I cant believe that.


What would you do? My first idea was to send the dvd with my pictures to dr dake and beg him to habe a look at them. But would he do that? I dont know. I dont know anything by now. Never been that dissapointed in my life.

Dont know how, bit pleas help.

Tim
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Re: MS but not a single stenosis?! Help!

Postby ErikaSlovakia » Thu Oct 01, 2009 10:36 am

Tim78 wrote:What would you do?
Tim


I would go to Dr. simka to ask him for a Doppler USG.

Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Tim78 » Thu Oct 01, 2009 10:43 am

I´ll do that. Has this forum private mail? Would you send me contact information?

But if the MRV does notshow any stenoses what can be treaten and aht can a doppler show that a MRV cant`?

Tim
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Postby whyRwehere » Thu Oct 01, 2009 10:48 am

I think Dake would have a look if you sent him a copy of the pictures. He's done it for others.
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Postby mrhodes40 » Thu Oct 01, 2009 10:50 am

I believe others have had MRV that were not clearly showing a stenosis.

Mine did not show it by looking at it from the front, they had to look at the side to see this problem, Dr Dake had to ask them to turn the images so he could see it.

He knew there was a stenosis in my neck next to my jaw because he had an MRI of my neck done too, on the MRI it was clear that the jugular was smashed flat, like a finger had pushed in from the front so only a small slit was open along the back side of the vein.

from the FRONT the jugular looked just as big as it should you had to see from the side to see the truth.

They have to know what they are looking for. Dr Dake says that CT scans are less dependant on the operator knowing what they are doing
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby ErikaSlovakia » Thu Oct 01, 2009 11:13 am

Tim78 wrote:I´ll do that. Has this forum private mail? Would you send me contact information?

But if the MRV does notshow any stenoses what can be treaten and aht can a doppler show that a MRV cant`?

Tim

mariansimka@poczta.onet.pl
It is already somewhere here.

As I have read here now, it is also possible to send the CD to Dr. Dake. I would do that, too. Doppler is different test and shows different things from MRV.

Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby LR1234 » Thu Oct 01, 2009 12:53 pm

I had a similar problem in that the dr's in the UK could not see any stenosis. Dr Dake was good enough to take a look for me and he saw stenosis at C2 and then a second stenosis further down the left jugular vein.
I then wrote to Dr Z to ask him why there was such a difference in the opinions and did that mean I had stenosis or not. His reply was MRV is not the way to diagnose CCSVI he believes that the only way to see reflux is to look with a doppler.
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Postby ErikaSlovakia » Thu Oct 01, 2009 12:57 pm

Yes, exactly.
This is what I was told as well.
In my case, Dr. Simka will skip MRV and will do phlebography as a part of the treatment at the end of October.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby cheerleader » Thu Oct 01, 2009 1:05 pm

Posted this on another thread...but I believe the future definitive protocol for diagnosing CCSVI is now being used at Jacobs Neurological Institute. They are combining the doppler technology (transcranial and neck as taught by Dr. Zamboni) to access flow and reflux with the MRV (as preferred by Dr. Dake) technology. The two combined give a complete picture. The venography (with radioactive dye) is essential for treatment, but minimizing the usage of venography for diagnostic purposes is advisable.

I know it is very frustrating right now...but the doctors are trying to use the technology to the best of their abilities.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Tim78 » Thu Oct 01, 2009 1:08 pm

Thank your for your fast answers and BIG thanks for Dr. Simkas contact information. In the german Forum they zold me a MRV is the only secure way to say a CCSVI is present or not because the doppler results are VERY operator dependant. Obviously this is wrong. Even the "high end" MRV is nothing if the operator has no exact idea where to look at.

I wrote to Dr Dake and to Dr Simka. Lets see whats comes next.

Tim
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Postby LR1234 » Thu Oct 01, 2009 1:09 pm

Thats the beauty of Prf Z and Dr D joining forces. Together they will design a total protocol for new dr's and because they are coming from 2 different angles they should be able to cover everything in terms of treatment. I am so excited about it all.
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Postby Tim78 » Thu Oct 01, 2009 2:00 pm

One further question: In one of Prof. Zamboni´s papers he says he did no stenting if jugular vein stenosis are present. because he has no stents shaped like a top down milk bottle. Dr Dake uses stents in jugular stenosis. Did he have such milk bottle stents?

Tim
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Postby Loobie » Thu Oct 01, 2009 3:53 pm

Mine are straight.
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Postby cheerleader » Thu Oct 01, 2009 3:59 pm

Tim78 wrote:One further question: In one of Prof. Zamboni´s papers he says he did no stenting if jugular vein stenosis are present. because he has no stents shaped like a top down milk bottle. Dr Dake uses stents in jugular stenosis. Did he have such milk bottle stents?

Tim


Zamboni was referring to the bottom of the jugs going into the brachiocephalic vein...the "lip" was to keep the stent from moving into the larger vein below... Dr. Dake is finding more stenosis higher in the jugs, and the vein is straight and cylindrical there, and the stent doesn't need a lip to stay in place until it is endothelialized. Dr. Dake is working with the Italian team on stent protocol.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby DIM » Thu Oct 01, 2009 11:56 pm

Cheer may I ask you, is there a protocol of examinations posted somewhere that an individual should perform prior to diagnosis from a good vascular doctor?
I mean if my wife wants to do all the tests what are they exactly, what machines (type of doppler machine, type of MRV) are needed etc, we are so close to Dr Zamboni at Italy and believe it or not I am the only one person in Greek MS forum that talk about it and I am not patient, no-one wants to know or believes this new field of MS.

PS:Wife has last few days a slight numbness in her right index finger which after her daily training goes immediately away, coincidence?
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