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.
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.
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