Normal MRV...contact help?

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

Normal MRV...contact help?

Postby healthymama » Thu Dec 17, 2009 9:56 am

An acquaintance through facebook got an MRV done this week at a local Utah hospital and it came back normal. They did not use a special protocol and I feel the radiologists don't really know what they are looking for. I feel she should not give up. I suggested sending the results to someone who knows what they are looking for. It seems everyone, Simka, Dake, Haacke are all so swamped. I don't know who to advise her to contact. Any ideas?
Thanks!
-Sarah

P.S. The vascular surgeon I contacted is getting the proper software for the MRI machine for the protocol I brought to him. Looks like it will be mid-January before that is ready.
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Postby MaggieMae » Thu Dec 17, 2009 11:42 am

You are correct. There are others who have had a MRV and were told that the results were normal. Then when read by Dr. Dake, he found stenosis. Don't give up. My husband had MRV at our regional hospital and it was not done correctly.
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Postby ErikaSlovakia » Thu Dec 17, 2009 11:58 am

Well, I had 1 MRV, 2 CTs and 4 Dopplers in Slovakia - all negative.
I sent the CDs to Dr. Simka and Dr. Schelling - they could not find anything there either.
First of all it must be done correct way - Haacke`s protocol.
I think even if you send the CD to Dr. Haacke he would not be able to find there anything.
It is not such a huge problem to learn Haacke`s protocol. It takes some time, some training ...
Moreover doctors in the USA speak English just as Dr. Haacke. I am not joking now but imagine slovak doctors - some of them speak English but not perfect. I understand Slovak doctors need more time.
Good luck!
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 thisisalex » Thu Dec 17, 2009 12:25 pm

ErikaSlovakia wrote:First of all it must be done correct way - Haacke`s protocol.
I think even if you send the CD to Dr. Haacke he would not be able to find there anything.



as i have learned the Haacke protocol is "only" for finding iron content in the brain, and is not for finding vein stenosis... a normal MRV is able to show big stenosis... or not. am i wrong?

thank you
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Postby ozarkcanoer » Thu Dec 17, 2009 12:42 pm

It is my understanding that Haacke's protocol will do both. He wants to test for iron deposition and he wants every MRI performed on an MS patient's brain to also include the neck and all the veins. Dr Haacke's website has some pictures of a normal brain.

http://www.ms-mri.com/

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Postby ErikaSlovakia » Thu Dec 17, 2009 12:57 pm

thisisalex wrote:
ErikaSlovakia wrote:First of all it must be done correct way - Haacke`s protocol.
I think even if you send the CD to Dr. Haacke he would not be able to find there anything.



as i have learned the Haacke protocol is "only" for finding iron content in the brain, and is not for finding vein stenosis... a normal MRV is able to show big stenosis... or not. am i wrong?

thank you

As I have learned his protocol is for MRV and his SPIN software known as MRI-SWI is for iron in brain or maybe for both.
I was told they have used Haacke`protocol for my MRV in Poland and they found the problem. They did not check the iron in my brain in Poland.
I am waiting until they install the SPIN software - MRI-SWI in Bratislava.
I hope they will be ready in January.
Maybe somebody else should reply this post so we are sure.
I am only sure regular MRV is not good enough to detect CCSVI.
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 thisisalex » Fri Dec 18, 2009 11:26 am

I have checked the Haacke protocol more detailed. (titled MS protcol training, Wayne State University, october 29 2009. filename: 12.pdf)
It has four main items to proceed:

1. - 3D SWI: this is for determining the iron content of the brain
2. - 2D MRV: is this a normal MRV?
3. - 3D MRV: is this a normal MRV?
4. - Flow quantification: this is for measuring the flow of the veins (?)

I am going to have an MRV in a few weeks. It will be a "normal" MRV made by a person who is not aware of CCSVI or the Haacke protocol.

My question is: what is included in a normal MRV (regarding the 4 items above) in Europe? Im sure SWI is not, but what about 2D, 3D and flow quantification? is Haacke-s 2D and 3D MRV protocol similar (or the same) as a normal MRV? is flow quantification included in a normal MRV?

Im not sure i can ask for a special protocol, that is why i ask about this topic... please someone explain it for me?

thank you very much
alex
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Postby ErikaSlovakia » Fri Dec 18, 2009 12:14 pm

thisisalex wrote:My question is: what is included in a normal MRV (regarding the 4 items above) in Europe?
alex

I just can try to answer this question.
1. my first MRV was done in Slovakia - they did not know anything about Haacke, they knew about my positive Doppler test from Dr. Simka.
This MRV test was negative.
2. My second and third MRV was done in Poland. I remember I was told they used Haake`s protocol. Both were positive - it is clear visible I had problems with my left jugular vein.

Because of these facts I think your MRV will be negative.
I do not know anything about 2D or 3D.
I am sorry I did not help you much :(
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 mrhodes40 » Fri Dec 18, 2009 5:52 pm

Well I edited because I am a terrible typist and ended up with double posts. I am so sorry, overtired I guess :oops: :oops:
Last edited by mrhodes40 on Fri Dec 18, 2009 6:21 pm, edited 1 time in total.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby mrhodes40 » Fri Dec 18, 2009 5:57 pm

brother...talk about double post
Last edited by mrhodes40 on Fri Dec 18, 2009 6:20 pm, edited 1 time in total.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby mrhodes40 » Fri Dec 18, 2009 6:18 pm

To me this is the area where we can get ahead of ourselves in a very negative way; getting MRV's dopplers and other testing in the assumption this is just going to show up the same an MS lesion does: as if ''it's there or not'', when in reality there is a need for education to even be able to find it .

Marc's tale of getting an MRV then having it declared normal by the radiologist, then declared normal by a friend of the family MD, then seen by Dake and declared occluded jugs both sides, then the NIH agreeing Dake was right about one jug---but not the other is a good example of the fact that medical opinion is just that opinion based on what THAT person has learned and knows, not "the truth".

This is not cut and dried and millions of people giving hundreds of clinics the erroneous idea that they have adequately tested numbers of MS patients who have no stenosis is perhaps REALLY not helpful...it is just asking for someone to write a paper "we tested 50 people and only one had stenosis..."

We need people to get training in the Zamboni doppler protocol at Jacobs or something and demand that we only get really good diagnostics that are proven to see these anomalies....and for the next qualifying statement I make an assumption that the JNI work when it is released mimics Dr Z's as Dr Guttman said it does...in the majority of MS patients.

If JNI can see this with blinded researchers only in MS patients then there is something there that is reliably diagnosable by a trained person that is related to MS specifically. We need diagnosticians with that skill level otherwise it is a waste.

A friend recently found out her mammogram last year and the year before missed breast cancer. Her chances are now slim. Good diagnosticians who know what to look for and have demonstrated skill in finding it cannot be over emphasized.

Lest some people think that it should be visible to regular Joe radiologist right now with no training otherwise it is nothing I would ask this: if a new kind of lesion visible on mammogram was identified as precancerous when before it was not recognized as anything other than "normal", wouldn't you expect and demand that your mammogram radologist had the skill to identify this anomaly before putting confidence in the finding that your mammogram was "normal"?

Just MHO
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby thisisalex » Sat Dec 19, 2009 1:03 am

mrhodes,

you're absolutely right! But its not possible for everyone to go to dr Simka or to dr Dake. way too many people...and if you have a really big trouble in your veins it will be shown on a regular MRV also.

But this is a good way to get in contact with a radiologist, to give them the paper, make them interested. these people are invisible for a patient, they dont get in contact with them usually

of course i try to force a Haacke protocol :)
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