Discussing CCSVI With Your Doctor

Many physicians are completely unaware of CCSVI, and you may be the first to introduce them to this theory and the supporting research.  It is important that you prepare yourself with the necessary tools to reach out to them, cultivate their interest, and enlist their help.  The purpose of this section is to help you strengthen communication and develop a supportive relationship with physicians who may become part of your CCSVI care team.

Part A- Specific Information on How to Build Your CCSVI Physician Team

Three basic medical specialties that might be involved if you are seeking to be evaluated and treated for CCSVI:

A. Primary Care Physician (PCP), may:

1. Provide referrals
2. Communicate with your interventional radiologist or cardiovascular specialist on follow-up requirements post-procedure
3. Help with insurance reimbursement issues

B. Neurologist, may:

1. Diagnose multiple sclerosis
2. Provide assessment of ongoing status and/or progression
3. Provide medication prescriptions for MS
4. Provide follow-up evaluations to determine neurological efficacy of CCSVI treatment
5. Communicate with your interventional radiologist or other vascular specialist to report any changes in neurological status

C. Interventional Radiologist (IR) or other Vascular Specialist (VS), may:

1. Determine if diagnostic imaging is needed
2. Supervise technician for diagnostic imaging, such as high quality MRI/MRV and/or Doppler ultrasound images
3. Interpret images for CCSVI and make diagnosis
4. Perform catheter venography, possibly including venous angioplasty and/or stenting
5. Follow-up with patient and/or physicians

Resources and Strategies for Building your CCSVI Physician Team

A. Enlist your PCP as your first ally when seeking specialists to help you explore CCSVI.  If your physician has not heard of CCSVI, it will be helpful to take along a file folder that includes the items mentioned in Part C of this document- Suggested Materials to Help Introduce a Physician to CCSVI. 

B. Many neurologists are focused on the neurological symptoms and pharmacological treatment of MS as an autoimmune disease.  You will be asking them to think outside-the-box and consider other factors, such as CCSVI, that are not within their scope of practice.  In an effort to make your neurologist part of your CCSVI team, present him or her with similar information as your PCP.  In the event that your neurologist is not willing to participate, determine if your PCP is willing to provide follow-up care.

C. Interventional Radiologists and other vascular specialists are the part of your team that you will rely on for testing and treatment.  Currently there are only a small number of specialists in the US with experience working with CCSVI.  That will change with time.  Efforts are being made right now to develop centers of excellence around the country so patients who suspect they may have CCSVI will not have to travel long distances or seek help from physicians without training and experience with CCSVI. Until then, here are some tips for finding an IR in your area who may be willing to work with you.

• Consult with your physician team- PCP, Neurologist, and any others
• Network with other MS patients in your area to help identify potential specialists
• Use the Society of Interventional Radiologists website, www.sirweb.org, to locate potential physicians within your region (go to left side of home page, use "doctor finder").
• Utilize the search engine on www.thisisms.com for locating physician names and send private messages to patients in your geographical area to share information
• Search the websites of regional hospital medical centers for appropriate specialists
• Use the yellow pages or other directories to find physician listings
• If you are seeking to have a procedure done, explore all possibilities in the US prior to considering options overseas.  While venous angioplasty and stenting are not considered major surgery, complications can occur, and follow-up procedures are sometimes called for.  If follow-up is needed, you are in a much better position if you have rapid access to your medical team and can communicate in the same language

Once you locate physicians that might be appropriate for you, research these physicians to the best of your ability, utilizing online resources, physician and patient recommendations, and your State medical board of examiners.

D. Once you have developed your list of potential IRs, you will need to contact them directly to determine if they are interested in and able to diagnose and, potentially, treat your CCSVI. While you may choose to discuss their involvement with CCSVI over the phone or in person, below is a sample letter to a potential Interventional Radiologist should you choose to approach one this way:

Dear Dr.__________, 

I have multiple sclerosis and have been following the research on Chronic Cerebrospinal Venous Insufficiency (CCSVI).  Recent studies indicate there may be a significant relationship between MS and stenosis in the jugular and azygous veins.  (Please see the attached studies, Dr. Haacke’s test protocols and the website references for more information.)

I am seeking a vascular specialist who is interested in exploring the possibility that CCSVI is a factor in my MS.  This would include testing and/or treating me for CCSVI based on the work done to date by Dr’s Zamboni (Italy), Zivadinov (Buffalo), Simka (Poland), Dake (Stanford), Haacke (Detroit and Hamilton, Ontario) and others.

You can reach me at (phone and email contact information), or I will call in one week to follow up on this letter and determine your interest.

Sincerely,

Your name

E. Example questions to ask a potential IR or VS (modify as necessary):

1. Are you familiar with CCSVI?
   • How did you become familiar with CCSVI?
   • Have you consulted with any doctors that have been involved in CCSVI diagnosis and treatment?


2. Do you have any experience with the CCSVI diagnosis?
   • How long have you been doing it?
   • How many patients have you diagnosed?
3. What non-invasive, diagnostic testing would you conduct?
4. How have you learned about specific CCSVI diagnostic techniques?
   • Have you modified your approach since you began testing and diagnosing?
5. Do you have any experience with CCSVI treatment?
   • How long have you been doing it?
   • How many patients have you treated?
   • With what specific treatment, i.e. angioplasty or stents?
   • Have you modified your approach since you began treating?
6. What do you have to see in the diagnosis to move forward with treatment?
7. Is treatment part of a clinical trial or stand-alone?
8. Do you have IRB approval for this procedure?
9. What do you consider the risks involved in this procedure?
10. How do you conduct follow-up after the procedure?
11. Based on your experience, will this procedure be covered by insurance? If not, what is the potential cost?

F. And of course, whenever you feel that a member of your physician team is not a good match for you, you should consider finding a new physician.

Part B- General Strategies for Communicating Effectively with Doctors About CCSVI

Preparing to talk about CCSVI

Many people become anxious prior to and during any visit with a physician.  An appointment to talk about CCSVI is important, so it is worth spending time to prepare.  Careful preparation will help keep both you and your physician on track and utilize your time effectively. 

Not all physicians will be interested in CCSVI.  As a matter of fact, many will NOT be.  If you detect an interest, however, cultivate it by making an appointment to discuss it further with him/her.  You might ask the physician, “Would you like me to send CCSVI research documents and the address of a helpful website prior to the appointment?”

Prepare for the appointment by thoroughly reviewing the CCSVI Alliance website, familiarizing yourself with the venous anatomy of the head and neck area, and understanding how CCSVI is both diagnosed and treated. Don’t assume your physician will or won’t be interested in CCSVI, but be prepared to gracefully accept the possibility of being turned down. If this happens, move on to the next doctor on your list.  It is important for you to have a fully committed, well-informed, skilled practitioner on your health care team especially when contemplating something as new as CCSVI.

Take a file of introductory information (click here) that is pertinent in addition to the original CCSVI material you may have sent.  Include a brief review of your medical history with key information and dates (see Summary section below).  Also, consider taking someone with you who is well-informed about CCSVI and will listen and question the things you might miss in the conversation.

Attempt to assess the physician’s knowledge about CCSVI as a place to begin your discussion so that you do not assume too much or too little.  Although you are in charge of the visit, listen carefully to what he/she has to say as a guide on how to proceed.  For example, your doctor may already have had opportunities to see stenoses of various types in the vascular system in the past or have a personal interest in MS or CCSVI.

A prepared list of questions, such as the one given in Part A, customized to your unique situation, is essential to make sure you get all of your concerns addressed in the time allotted for the appointment.  If you are bringing someone else with you to the appointment, give him or her the list of questions in advance. Prioritize your questions so the ones that matter the most to you are asked first.

Even though the doctor’s standard medical form has space for you to list your medications, prepare your own list in advance including supplements and dosages of each so you don’t forget any.  Some offices will attach your list.  Others will have you copy it to their form.

If you have trouble remembering information or taking notes, consider taking a small digital tape recorder.  It is unusual for physicians to encounter a patient wishing to record the appointment, so it is important that you ask the doctor if he or she is comfortable with a recorder.

When the appointment is over, be sure you leave with a clear understanding of how this physician believes he or she can or cannot support you.  If you are unsure…ASK!

Your responsibility as a patient

Your responsibility in any health care encounter is to be well organized, informed and prepared with succinct written information about your history, concerns and pertinent questions.  You must be very specific about the issues you wish to address.  For the best use of your allotted time, you must clearly state why you are there and what you hope to gain from the visit.

Remember, this is YOUR visit and the discussion is about YOUR health.  It is vital that you assume responsibility for keeping the discussion focused.  Do not be afraid to speak up and, if necessary, refocus the discussion.

Always be professional and courteous.  Remember, you may not accomplish your goal of enlisting this physician’s support during the visit, but you may succeed in opening the door for someone else with the same concern.  Cultivating good relationships with potential medical allies of CCSVI is a job we can all do.

Summary

Here is a checklist to help you prepare to talk with your doctor:

• ______  Review the CCSVI.org website material carefully including the research papers for articles you may wish to download and take to potential physicians.
• ______  Consider recruiting a knowledgeable companion to join you for the appointment and ask them to read the CCSVI website.
• ______  Consider preparing three copies of your customized question list (one for yourself, one for your companion, and one for the physician).
•  
• ______  Prepare a list of your current MS symptoms. You will want to be very specific, for example:

- Constant fatigue that becomes worse in heat
- Bladder infections about four times a year 
- Blurry vision at the end of the day, Etc. 

• ______  Prepare an abbreviated medical history as it relates to MS. Again, you will want to be very specific for example:

 - January 2004.  First exacerbation.  Diagnosed with Relapsing/Remitting MS after a bout of optic neuritis and two weeks of constant left hand numbness.  Diagnosis made by Dr. XXX after an MRI and spinal tap.

 - March 2004.  Second exacerbation similar to first one.  Treatment with DMD initiated.
*Stable for next three years, but noticed increasing fatigue during that time.

• ______  Prepare medication and supplement list including dosages.

Part C- Suggested Materials to Help Introduce a Physician to CCSVI

CCSVI.org Pages

• What is CCSVI?
• CCSVI FAQ
• Addressing the Myths
• CCSVI Treatment and Efficacy
 
Published Papers

Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis

Zamboni, et al., 2008: 65 MS patients and 235 controls were tested for venous abnormalities using doppler high resolution examination.  The MS patients also underwent selective venography.  A strong correlation was found between MS and venous abnormalities.

A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency

Zamboni, et al., 2009:  This paper summarizes results 18 months after "Liberation Procedure" on 65 MS patients.  Study included 35 RRMS, 20 SPMS, 10 PPMS patients treated.  CCSVI endovascular treatment significantly improved MS clinical outcome measures, especially in the RR group.

Internal jugular vein morphology and hemodynamics in patients with multiple sclerosis.

Al-Omari and Rousan, 2010:  Hemodynamic abnormalities and morphological changes involving the internal jugular vein are strongly associated with MS. These findings can be demonstrated by a non-invasive, cost effective Doppler ultrasound criteria.

Embryological background of truncular venous malformation in the extracranial venous pathways as the cause of chronic cerebro spinal venous insufficiency.

Lee, Laredo, Neville, 2010: Compares the mechanisms and clinical outcomes of truncular venous malformation (VM) of the liver and CCSVI.

Websites

CCSVI Alliance: www.ccsvi.org

Dr. Mark Haacke’s website: www.ms-mri.com