E-mail from Dr. Haacke....

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

E-mail from Dr. Haacke....

Postby cheerleader » Mon Nov 23, 2009 11:48 am

OK. Overwhelming the docs that want to help us is not going to work. Dr. Haacke understands this, but his e-mail accounts are full, his phone won't stop ringing and people have found out his private information to contact him. This is not good. Believe me, he understands the desperation, but we've got to do better.

Dr. Haacke wants to help establish a testing protocol for MS patients. He will not be able to treat for venous stenosis and reflux, but he wants to help find it. He is working without any income or support to start an international coalition of testing facilities.

How can we help him?
1. Ask MS societies to donate to his research now.
2. Ask the neurologists/ interventional radiologists and MR technicians in your area to consider being part of his research protocol.
3. Only use his website to send professionals/doctors/ information. Please respect his personal privacy.
4. Make a donation on his site-

Dr. Haacke has changed his front page to ask us to help him-
Thank you very much for each and every one of you for contacting us and for your offers to support this research. We have tried to answer each of you individually but this will take time because of the thousands of people who have responded. Due to the high call volume, we request that you please review the information below and contact us only using info.mrimaging@gmail.com.

REQUIRED STEPS:

Review website www.ms-mri.com.
Download "Research Protocol" by filling out the required form from the menu on the left.
Take the Research Protocol to your Neurologist to run a new MRI scan.
Send these new images to us via CD or DVD.
We will process the data and return the images back to you to take to your Neurologist to review.

FOR MORE DETAILED INFORMATION READ THE FOLLOWING:

The type of MRI we are proposing is quite different than what you will have had before. Specifically, this new protocol will acquire a full brain and neck picture of the veins (MR angiography), flow quantification (FQ) of many of these veins to look for reflux (backward flow), and susceptibility weighted imaging (SWI) to look for iron and venous abnormalities.
We do not need your current MR scans at this time. Please do not send any data at this time.
Our goal is to validate Zamboni's work and compare the CCSVI with our own work on iron deposition in MS patients.
Please note that a careful controlled study with many patients has not yet been done and so there is still little experience using MRI to detect the venous vascular abnormalities and effects in the brain, neck and spine. That is one of our goals and this will take at least several months to get preliminary data.
You will need to speak to your doctor (preferably your Neurologist) to ask if this new MR scanning can be done where you live.
Please review this site carefully where you will learn more about the concept and where the proposed new MRI protocol can be found (see Collaborators heading to view current sites).
Our protocol is on the web for any Radiologist who would like to try this MR scan. Please go to research strategy to download the MR protocol and give it to your imaging center or the Radiologist. We are happy to discuss this with any medical center to help them set up this protocol.
If you get the scanning procedure done, we are happy to analyze it for the iron component and for the 3D vascular displays. This information would then be sent back to you for you to take to your doctor. Once you have this new protocol done, please send your data in CD or DVD format.
Most sites are already inundated with requests to be scanned. We will contact people to be volunteers as we can but during the next few months we will only be able to do a limited number of people until we have further scientific evidence as to the vascular abnormalities that can be seen with MRI. Each site is willing to take 10 to 20 people at the moment. As you can imagine, we already have ten times that number of volunteers at each site.
We believe that the best methods in the long run may be a combination of both the MRI protocol and an ultrasound protocol to find all relevant vascular problems.
We do not advocate any surgery in this research protocol at this time. Rather, the idea of collecting these images is to find out if there are any major stenoses of the jugular or azygous or any other veins that may affect blood flow to the brain.
Recall that this is a research study only.




Thanks,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby whyRwehere » Mon Nov 23, 2009 12:49 pm

I saw on the Canadian and US MS society sites, that they are willing to fund worthy proposals. I don't know if I believe them, but I would like to know if anyone has approached them for funding yet and what they said to that...
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Postby bestadmom » Mon Nov 23, 2009 1:01 pm

Joan,

Please post this on facebook. The brunt of chatter of people wanting to send their disks to Dr. Haake came from there.

Michelle
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Postby MS_mama » Mon Nov 23, 2009 3:16 pm

yep, I think it bears repeating that dr. Haacke is not doing any interventions. When I spoke to the research coordinator (before the documentary) she said that they were getting lots of calls with people asking, "How can I get the surgery?" and she stressed that this is an imaging study only.
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby 10yearsandstillkicken » Mon Nov 23, 2009 3:42 pm

I would think that Dr. Haacke or the center would need to request funding officially. I wouldn't expect that NMSS would mail a check out because we asked regardless of the study.
Chuck
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Postby whyRwehere » Mon Nov 23, 2009 10:48 pm

Chuck, I meant Haacke or Dake or Zamboni, etc, I didn't mean the average Joe.
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Postby pgm1 » Tue Nov 24, 2009 3:04 pm

hi to every one out there
does anyone know where to get the Liberation Treatment done?in Canada or Europe? would realy love to know
Thanks Pam
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CCSVI

Postby dlb » Tue Nov 24, 2009 3:38 pm

To: Cheerleader

I apologize... not only am I a "Newbie" to this forum but I am completely new to any Forum, how they work, how to find info, etc.... so I feel like I'm in an ocean on a raft right now. So... I hope this gets to you somehow.

Am I correct in my assumption that your spouse has had stents for stenosis? If so, could you tell me if he has experienced less headaches since the procedure? I do get headaches & after the news release and info we now have about the iron deposits & their toxicity, I wonder if that is why MS patients get headaches, ergo, have his gone away? Thanks
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Postby questor » Tue Nov 24, 2009 9:18 pm

dlb,
Cheerleader created an entry for her husband Jeff in the CCSVI Tracking Project sticky, this is where those who have had stents installed to treat CCSVI discuss their history and response to treatment. Here is a link to that post about Jeff's experience:

Link to CCSVI Tracking Project for Jeff's History

There is also an entire topic where Jeff's experience is documented, you may find an answer to your question here:

Jeff's Experience at Stanford

Oh, and here is a link to a post that talks a little about how to use the search function to find information in earlier posts:

Welcome to New Visitors from Facebook

I hope this is helpful...

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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Postby dlb » Tue Nov 24, 2009 10:15 pm

Thanks Tracy....

I figured quite a bit of that out after reading a little more on the forum - bit of a knee-jerk reaction to start firing stupid questions. And, thank you for the help
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Postby 10yearsandstillkicken » Tue Nov 24, 2009 11:33 pm

Chuck, I meant Haacke or Dake or Zamboni, etc, I didn't mean the average Joe.


Sure. I guess it seems the various societies are indicating that they need a proposal. And the researchers are saying they need money. Hopefully someone will make a request…
Chuck
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Postby ErikaSlovakia » Wed Nov 25, 2009 2:11 am

pgm1 wrote:hi to every one out there
does anyone know where to get the Liberation Treatment done?in Canada or Europe? would realy love to know
Thanks Pam

Hi!
In Europe it is in Poland, in Katowice.
Dr. Simka, Dr. Ludyga + team do that.
I have got one stent there on November the 3rd.
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 Algis » Wed Nov 25, 2009 2:38 am

On the page "Collaborators" seen here:

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

One can see that there are CCSVI 'mark' for China (Beijing) and Japan (Sapporo).
Does it mean they can 'investigate' or is it that they can do the 'complete process'.?..

Tho I love Zubrowka; Beijing and/or Sapporo are closer from me and I speak much better Chinese than Polish :oops:

I'll try to email them and see; but if anyone else have insights on this I'd appreciate;

Thanks,

Algis
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Postby ErikaSlovakia » Wed Nov 25, 2009 4:21 am

Algis wrote:On the page "Collaborators" seen here:

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

One can see that there are CCSVI 'mark' for China (Beijing) and Japan (Sapporo).
Does it mean they can 'investigate' or is it that they can do the 'complete process'.?..

Tho I love Zubrowka; Beijing and/or Sapporo are closer from me and I speak much better Chinese than Polish :oops:

I'll try to email them and see; but if anyone else have insights on this I'd appreciate;

Thanks,

Algis

Hi, yes I also saw it, I think they can do correct MRV, but I do not think they do the procedure as well.
By the way, all Polish doctors speak English - I am now talking about the doctors from the team of Dr. Simka.
So far I only have the information that Dr. Zamboni was performing the procedure in Italy, Dr. Dake in California and Dr. Simka in Poland.
Maybe you will tell us more news.
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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