FAQ

GENERAL

Can I have my CCSVI test and CCSVI treatment procedure all in one trip? Yes, typically testing and treatment are scheduled on consecutive days, unless over a weekend.

What if I’ve had my CCSVI test done somewhere else, can I have the CCSVI treatment angioplasty with you? The IRB approved study requires that the testing, treatment, and follow up be done here. If you have had the test done elsewhere, you will need to have the test done at our facility as well.

How long does the Haacke Protocol for CCSVI testing take? About 1.5 hours. Yes that's a long time but you can watch a movie or listen to music if you like (bring your own DVD if you wish!).

What if I'm claustrophobic? The bore of the magnet is a narrow space and it's noisy. About 20% of people just hate it. Most likely you have had an MR scan before so you know. The testing facility does not provide sedatives or anti-anxiety medications for claustrophobia.

Will medications interfere with the CCSVI test results? Sedatives such as Xanax or Valium, pain medications, and caffeine can effect the functional BOLD part of the test, and so we ask that you avoid taking these medications for the first 15 minutes of scanning.

Should I go off my Disease Modifying or Immunosuppressant drugs? We do not recommend going off these medications. In our studies, we encourage people to stay on their medication for the duration of the study ( 12 months ).

I am in a wheelchair, will I be able to get into the MRI machine? As you know, no metallic objects including wheelchairs and oxygen tanks are prohibited from being in the MRI room because of its strong magnetic field. In addition, because we are a research facility, not a hospital or radiology clinic, we ask that you bring a family member or friend who can provide assistance to and from the MR bed (about 10 feet). There will be a MR safe wheelchair available to help with the transfer (250lb weight limit).

What if my neurologist refused to refer me for CCSVI testing? In California, any doctor (including chiropractors and oriental medicine doctors) are licensed to order diagnostic tests including MRI and blood tests. Dr. Hubbard is the head of research here and does not have a private practice.

TRAVELING

Which airport should I fly into? San Diego International Airport (SAN).

Can you recommend nearby hotels/motels?

$99/night + tax discounted rate-Holiday Inn North Miramar. 1 mile from the the Applied fMRI Institute (location of testing), 17 Miles from the treatment facility. The Holiday Inn can provide free shuttle service to and from the Applied fMRI Institute for testing (but not treatment), and $12 shuttle service to and from the airport. Call 1-858-695-2300 and ask for the "Applied fMRI Institute" rate or Click HERE to book your room at this rate.
$109/night + tax discounted rate- Del Mar Hilton. 1 mile from the beach and treatment facility, 17 miles from testing. Free shuttle to and from the treatment facility (but not testing), $26 each way to and from airport. Call 1-858-792-5200 and ask for the "Hubbard Foundation" rate or Click HERE to book your room at this rate.

If I am coming from out of town can you recommend a cab service? Call BORIS at (858) 220-9130: wheelchair taxi.

Do you have a wheelchair I could use while in San Diego? The company ScootAround Mobility Solutions can help. 1-888-441-7575.

I'd rather not plan the trip myslef, is there a service that can plan it for me? Global Medical Excellence- Travel Concierge can meet you at the airport, provide transportation to testing and treatment, and arrange air travel and hotel at reduced rates. 1-888-9FLY-GTE (1-888-935-9483)

TESTING AND TREATMENT

What is the Haacke Protocol for CCSVI Testing?
E. Mark Haacke, PhD a world-renowned MRI physicist at Wayne State University has compiled a series of MRI scans designed to comprehensively evaluate the cerebral venous drainage system and the status of MS lesions. The Haacke Protocol includes:
MR venography with and without gadolinium contrast which shows the veins of the head and neck and identifies obstructions or missing veins
Flow Quantification which measures the speed and direction of flow in the veins of the brain and neck
SWI (Dr. Haacke's invention) which shows the very small veins in the cortex and also shows iron accumulation
T2 and T1 with and without contrast which identify the amount of old and new areas of inflammation ("plaques")

In addition, at AFI we are also using functional MRI BOLD to measure venous delay from the cerebral cortex.

Dr. Haacke’s team in Detroit typically require 2-3 weeks to perform the full analysis (a 30+ page report) although at AFI we are able to provide flow measurements and pictures of the neck veins to the interventional radiologists the same day as testing.

The interventional radiologists use the MR venogram images to visualize what the veins look like before they begin and to plan their catheter strategy. We use the flow quantification to actually measure the rate of flow in each vein, to determine what changes occur after venoplasty and to have a benchmark if there is a concern about restenosis at some point in the future. The flow results are sometimes essential, dilating a blockage in one location will change the flow above and below the blockage and in the veins around it.

Why don’t you do CCSVI Doppler ultrasound at AFI? Most interventional radiology and vascular surgery practices use ultrasound for limited purposes. MRI, although more expensive, provides vastly more information not only about the appearance of the veins, but about flow, iron accumulation, and the presence of new and old MS lesions.

Tested for CCSVI somewhere else? Some patients (not many!) have negative studies(catheter,MRvenography and or,ultrasound) at other facilities. Since each of these facilities performed the tests somewhat differently it isn’t valuable for us to review their results. Our best recommendation, unfortunately, is to come to San Diego or one of the other registry sites where both testing and treatment can be repeated. We know this is a burden and we’re working on getting more registry centers as quickly as possible.

Catheter venography and venoplasty CCSVI treatment: An intravenous catheter is inserted into the femoral vein on the upper thigh. Under x-ray guidance, the interventional radiologist steers the catheter up through the iliac veins, that join to become the inferior vena cava that enters the right atrium of the heart. The IR steers right through the right atrium and into the superior vena cava where the azygos vein, that drains the spinal cord, joins it. The superior vena cava splits into the left and right brachiocephalic trunks that in turn split into the subclavian veins that drain the arms and the internal jugular veins that drain the brain. Abnormalities of any of these veins are identified by squirting dye through the catheter and observing the pattern of flow on x-ray. If an obstruction is identified a balloon is inflated that expands the narrowing, stretching the walls of the vein. The procedure can take anywhere from half an hour to three hours depending on what is found. Usually mild intravenous sedation is used. Sometimes blood thinners are used during or after the procedure.

Catheter Entry Side: One can get to the azygos and jugular veins by inserting the catheter in the femoral vein on top of the upper thigh on either side. Most physicians prefer the right because it’s a straight shot. One can look at the iliac(May Thurner) and renal and lumbar veins by entering from either side, but Zamboni prefers entering from the left. Make sure your IR discusses this with you before starting.

What about stents? Stents are only placed if ballooning fails to keep the vein open, either during the catheter procedure, or if several attempts at ballooning fail over time. We recognize that some IRs around the country are using stents as a first choice. We don’t agree with this strategy and we are actively tracking it. Our IRs will discuss this with you at your procedure intake. To date we have only placed 3 stents.

How do you know if you are going to an IRB approved doctor? Ask the IR your considering consulting to send you a copy of the “informed consent”. Near the bottom, just before the signature line it will list the name of the IRB and the contact information if in fact it has been approved by an IRB. If the physician is unwilling to send it to you prior to consultation that is a significant red flag. You can call the IRB to confirm that they are, indeed, participating and enrolling subjects. The principal investigator of an IRB is also required to inform you how many subjects/patients they have enrolled in the study(they cannot include patients they have treated outside of IRB approval). This is an FDA strict requirement. We strongly recommend that you only seek treatment from an IR who complies with these regulations.

POST VENOPLASTY, CHANGES & RESTENOSIS

What about Restenosis? Restenosis is a concern in any angioplasty procedure. According the Hubbard Foundation's research on 230 patients, there is a 6.3% incidence of restenosis (as of June 2011). Click on the link below for information on restenosis, no improvement, progressive worsening, and other post-venoplasty changes. Please contact Hubbard Foundation if you have any concerns.

CLICK HERE

Documenting Progress
You will be asked to complete health questionnaires before, 1, 6, 12 months after treatment. In addition, we would be very grateful if you would post on the Hubbard Foundation Facebook page and/or email us privately at hubbardfoundation@gmail.com about how you are doing. Although this feedback is ancecdotal it is still extremely valuable.

What follow-up should I have after the treatment? We recommend you be re-tested at 6 and 12 months to know if the treatment has stopped the progression of disease, and to look for restenosis. You may also contact your interventional radiologist and the Hubbard Foundation with any questions. You should also maintain close contact with your primary treating physician. The Hubbard Foundation also recommends a healthy lifestyle, including consideration of a diet and supplemenation associated with improved endothelial health.

IR did not treat some Haacke findings: The IRs can only balloon what they see during the procedure. If they don’t see a constriction they can’t balloon it. The issue is that MR sees anatomy and rate of flow, IRs see a brief squirt of dye. They usually, but not always match(a major focus at our center).

Catherization of External Jugulars: IRs tend not to focus on the external jugulars because they drain the face not the brain, although there can be exceptions.

HUBBARD FOUNDATION RESEARCH

What is an IRB? IRB stands for Institutional Review Board. These are committees of doctors and other hospital staff who insure that any studies of patients in their institution are safe for the patients and in general are good for the hospital. Every hospital whether in a university or private, have IRBs that most commonly review studies proposed by drug companies. These drug studies are typically well-funded, offering significant payments to the doctors, the patients and the IRB itself. Sometimes doctors will do their own studies that are not funded and rely on normal standard medical practices and insurance reimbursements. Finally there are so-called national IRBs that review studies and credential doctors from across the country.

The Hubbard Foundation currently has two IRB-approved studies: the first is a study of venous drainage in the brain using functional MRI, before and after venoplasty, approved by the Palomar-Pomerado Health District in San Diego, CA. the second is a Multi-center Registry of CCSVI Testing and Treatment, that is described in detail on this website.

Who is the Hubbard Foundation? In 1980, David and Arlene met on the Neurology unit at Bronx Municipal Hospital, Albert Einstein College of Medicine where David was a neurology resident and she was assistant chief of Occupational Therapy. For many years they treated headache and pain patients together and he did research first in pain and later using functional MRI. In May 2009 their son Devin had facial weakness and double vision and was hospitalized for MRIs, lumbar puncture and blood tests, the hospital neurologists diagnosed Acute Disseminated Encephalomyelitis (ADEM) and he was treated with high dose corticosteroids. In December 2009, he had numbness of his lower body, another round of MRIs and was diagnosed with multiple sclerosis. So the Hubbards went to the library (actually Google) like Lorenzo's Oil. In February, 2010, David went to the Hamilton Ontario meeting and met Drs. Haacke, Zamboni, Zivadinov. In March David went to Wayne State in Detroit to spend time with Dr. Haacke's MRI group. David joined Dr. Haacke's multi-center consortium to study CCSVI and now the whole family is coming together to work on it. More..

What is the difference between the Hubbard Foundation and Applied fMRI Institute? The Hubbard Foundation is a non-profit family foundation to promote research on multiple sclerosis and meditation. The Foundation owns the Siemens 3T tim Trio MR scanner and makes it available for both non-profit research and commercial MRI projects. The Applied fMRI Institute runs the day-to-day operations of the facility.

What about other neurodegenerative disorders like Parkinsons and Alzheimers? The CCSVI hypothesis has raised questions about whether other neurodegenerative disorders could be caused or aggravated by poor venous drainage from the brain. Of course at this point there is no evidence for this. Yet patients are quick to point out that it may take decades to collect that evidence, and that they should have the right to make their own decisions. So what is the right course for the Hubbard Foundation to take? We think that any patient who is able to take Haacke CCSVI protocol safely (for instance is not allergic to gadolinium or have kidney failure) should be able to do so. The bigger problem is what to recommend after the test. If the Haacke Protocol shows obstruction should we at the Hubbard Foundation recommend angioplasty? After some soul searching our answer must be a timid and brave 'Yes.' We believe this is the correct answer not only because the balloon angioplasty is quite safe, but perhaps more importantly because patients' rights include the right to make their own decisions after carefully weighing all the information that is now so readily available on the internet. At AFI they do require a prescription from the patient's physician which ensures some level of objective perspective and also is necessary for insurance reimbursement.

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