Multiple Sclerosis FAQ:
Frequently Asked Questions

What is the Haacke Protocol?
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.

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.

What kind of follow up will I need after the procedure? The day after angioplasty, you will have to come back to AFI for the 15 minute fMRI BOLD test. You can of course contact the Interventional Radiologist, and we also recommend that you maintain a relationship with your local physician.

What about restenosis? Dr. Zamboni has found that approximately 40% of patients receiving balloon angioplasty restenose within about 8 months, requiring a second, and rarely a third time. When restenosis occurs, typically the patient experiences a reoccurrence of the symptoms that have resolved after the procedure. If you experience a reoccurrence of symptoms, you should discuss re-angiography with your physician. You can also contact Dr. Hubbard directly if you think you are restenosing.

Can I have my test and procedure all in one trip? Yes.

What is the cost of test? $3,500 for the test. The CPT codes for the test are listed under Description of Tests.

What is the cost of the catheter angiography/ angioplasty? The procedure is done at two locations: an outpatient vein clinic in Del Mar (San Diego), or the hospital in Rancho Bernardo (San Diego). For those paying cash,( or whose insurance denies) the Del Mar facility will charge $7,500 for the physician and facility combined. For those with insurance, you can go to either facility.

Can I pay with a Health Savings Account (HSA)? Yes, we accept payment from HSAs and other credit cards.

If my tests show venous insufficiency, what then? If the Haacke protocol shows one or more obstructions in the internal jugulars or azygos veins, Dr. Hubbard will append a cover letter to the Haacke report recommending referral for catheter angiography and possible angioplasty. The reports can be taken to any vascular surgeon or interventional radiologist, including the IR group we work with.

What if I’ve had my test done somewhere else, can I have the angioplasty with you? The IRB study requires that the testing, treatment, and follow up be done here.

What if the test shows no obstruction or reflux, does that mean I don't have CCSVI? Dr Haacke and Dr Hubbard have discussed this at length. Dr. Zamboni and Sclafani both cite cases in which the Doppler ultrasound or MR venography looked normal but obstructions were found at surgery. Dr. Hubbard is working on a functional MRI protocol that measures venous drainage from the brain cells directly. This will tell us if there is a problem even if the tests of neck or azygos veins appear normal. The bottom line is that most surgeons will not perform "exploratory surgery" on a patient's jugular veins or azygos if they appear normal.

How long will it take for me to get the test results? We send our data to Dr. Haacke's MRI Institute at Wayne State Medical Center in Detroit immediately. It is currently taking him about 1 week to get his final report.

What is an IRB? Investigational review board of a medical center oversees the ethics and safety of new medical drugs, procedures and devices. Although angioplasty is not a new drug, device or procedure, neurologists at several hospitals around the country have been insisting that its use for MS is controversial and thus investigational. Dr Hubbard, also a neurologist, disagrees but obtained IRB approval from a San Diego hospital June 2010.

Doppler ultrasound, do you perform it? We do not perform the doppler ultrasound. We will be participating in Dr. Haacke's large study of 200 subjects which will compare the MRI venogram and doppler ultrasound method. Nevertheless Dr. Hubbard is confident that the MR protocol will provide significantly more comprehensive information. For Dr. Haacke's study, we do not yet know where the doppler ultrasound will be done. We will update this information as soon as we receive it.

How long does the Haacke Protocol take? About two 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.

Will medications interfere with the 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.

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 permitted 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.

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

If I am coming from out of town can you recommend nearby hotels/motels? There is a Holiday Express and a Holiday Select just a short drive away. More information can be found on the AFI website, www.appliedfmri.org provide a google map.

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.

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.