Sunday, April 1, 2012

My story of CCSVI

Multiple Sclerosis (or MS) symptoms, may be Chronic CerebroSpinal Venous Insufficiency (or CCSVI). As recent as just before 2009, Dr. Paolo Zamboni of Ferrara, Italy announced to the world that his research into his wife's symptoms of MS were caused by poor venous blood flow. A procedure similar to angioplasty of the arteries (correctly termed venoplasty) was performed on his wife's veins where there were narrowed openings in the pathways to her heart. He coined the term the "Liberation Treatment" because it liberated or freed her of MS symptoms.

WATCH Doctor Zamboni's video about CCSVI:
http://www.tinyurl.com/WT5Zamboni

Since that time, interventional radiologists around the world have been trained based on Dr. Zamboni's five criteria for CCSVI. To be a candidate for the "Liberation Treatment", he suggested that people with MS would have to present with at least two of the five criteria which could be determined using doppler ultrasound of the jugular veins. Those criteria are:

Criteria 1) Gray scale abnormalities of the proximal internal jugular veins. This is positive when vein abnormalities, flaps, or membranes within the lumen of the internal jugular vein.

Criteria 2) Positive changes in the cross-sectional areas (CSA) of the internal jugular veins. This is assessed at the mid-thyroid gland with the patient in the supine (0 degree) and upright (90 degree) position. This is positive when the CSA increases when moving from the supine to the upright position.

Criteria 3) Absence of color flow in the internal jugular veins. This is positive when there is a prolonged absence of flow seen for >1.5 seconds.

Criteria 4) Reflux in the internal jugular and/or vertebral veins in the supine (0 degree) and upright (90 degrees) position. This is positive when flow reversal is identified in both positions on doppler imaging for >1.5 seconds.

Criteria 5) Asymmetric flow in the deep cerebral veins. This is positive when the appearance of the venous waveforms in these veins during inspiration and expiration are asymmetrical.

The above can be given to any Interventional Radiologist who may be unfamiliar with the standard Zamboni CCSVI criteria for diagnosis.

MY PERSONAL EXPERIENCE:

Having MS symptoms for 39 years, I requested an ultrasound to see if I had CCSVI. After my tests were returned to my primary doctor showing I had possible reflux (reverse blood flow), he did a "little investigation" and suggested I go to Buffalo and get into one of their "studies". However, a study meant I could receive a "fake" treatment as a placebo test - only to be treated AGAIN after the test results were published.

I belong to an online community which is sponsored by the pharmaceutical industry, but because I have never taken any disease modifying drugs (DMDs) since 1971, I keep it as a reference to read comments by pwMS (people with MS) about their disabilities. One member, Linda, left that community drug free and I quickly followed her to Facebook. She had the first (that I personally knew of) CCSVI "Liberation Treatment" where I was amazed at her profound successful results. Her self-advocacy proved to me I needed to forge ahead with my quest to be treated because MS symptoms more than just likely could be a blood flow problem.

My angioplasty (venoplasty) was done by an Interventional Radiologist (IR) at the Albany Medical Center on November 8, 2010 after his new tests showed two of the criteria for CCSVI. The procedure was covered by Medicaid of New York at the time; but since then it is NOW considered "too controversial". By the way, my doctor called Linda's results that I discussed with him, "just anecdotal and doesn't prove anything." My neurologist agrees, because my diagnosis of Secondary Progressive Multiple Sclerosis (SPMS) has mild symptoms at this time and he didn't see anything different after my procedure. I also have progressively worse double vision since 2008 and my neuro-opthalmologist has changed the prisms in my lenses six times so far.



Here in my post-angioplasty video, you can see why my neurologist said "angioplasty for multiple sclerosis is just a theory." (no benefits - YET!)!)



Dr. Siskin of Albany explained verbally in person and wrote to me about my "possible vertebral compression" of my internal jugular vein, and told me it cannot be corrected (WRONG - see below!):

"The vein normally runs right next to the upper cervical spine. At the level of C1, the bones come right up to the internal jugular vein. That means, the narrowing we saw in the vein is due to the bone compressing the vein. By putting a balloon inside the vein and blowing it up, nothing would really be accomplished since the bone would still be compressing the vein. I want to reiterate that this is a normal finding in many people."

I would not take no for an answer; so I asked for another (MRV) test.

"... I do not believe that MRV will contribute to our understanding of what is going on here and will therefore not be prescribing it for you. We do not, as a matter of routine, order these studies for our patients because we believe that treatment decisions can be made without it."

The day I had my first consultation with Dr. Siskin in Albany (10/12/10), I met a woman (Jan Wexler) from Canada in the waiting room who was having venoplasty that day. Jan's venoplasty procedure was in Bulgaria that gave her remarkable symptom relief; however within 10 days her symptoms returned and she had a second venoplasty yet UNsuccessful before returning home. A blood clot prevented Interventional Radiologist (IR), Dr. Siskin, from entering the vein with a catheter. One other IR in the United States attempted to help (including the use of a stent) but it was also UNsuccessful. I feel blessed to have gotten her e-mail address to learn about her latest quest for her blood flow problems. I am glad she didn't give up as she was convinced that Dr. Zamboni's "theory" had validity because of her initial fantastic benefits in Bulgaria in 2010.

Early in 2012, Jan was the second patient with CCSVI to have a bypass for CCSVI at Excel Hospital; which is a private cardiovascular specialty hospital in Tijuana, Mexico. Here is the video that hospital personnel made of Jan before and after "bypass" surgery by Doctor Jose Hernandez, licensed in Mexico and American Board Certified Cardiovascular and Thoracic Surgeon (Heart Surgeon) with over 30 years experience:

http://tinyurl.com/JanWexler


Dr. Hernandez:
COMING SOON……………video of Dr. Hernandez sharing his ideas and concerns for correcting patients with CCSVI.

Since leaving his private practice in San Diego he went on to build Excel Hospital; which today is the leading cardiac hospital in all of NW Mexico. Here CCSVI-MS patients receive the benefit of the expertise of Dr. Hernandez and his willingness to offer help to those who have run out of options to be treated for blood flow problems.

Here is another video of a satisfied patient with CCSVI, who is a retired cardiovascular nurse now working as Medical Case Manager for Excel Hospital in a patient advisory capacity due to her MS symptoms that were treated with venoplasty. However one side was nearly 80% occluded (blocked) and couldn't be opened, so she will be having a surgical repair also:

http://tinyurl.com/TinaJenkins-RN

✿ ✿ ✿ ✿ ✿ ✿ ✿ ✿ ✿ ✿ ✿ ✿ ✿ ✿

There have been other very successful "IJV re-construction surgeries" and I will be going to Mexico for hopefully the same surgery on my left internal jugular vein (LIJV). Dr. Hernandez called me to discuss my concerns after I sent him the CDs from my 2010 venoplasty in Albany with the medical notes indicating my LIJV has "possible vertebral compression".

At my request, Tina was able to work with Dr. Hernandez to offer a "special package" for people desiring to know if they have CCSVI. More people are realizing DMDs are not the answer for blood flow problems. If pwMS are at least tested, it will give them an opportunity to experience the quality of care at Excel Hospital. Call Tina Jenkins, RN at Excel Hospital at 1-800-211-0690. A "determination" of the appropriate procedure needed will be helpful in procuring needed funds.

The patient needing "testing for CCSVI only" (with a possible guest) will fly into San Diego and stay the first night (#1) at LaQuinta "Old Town" Hotel or Days Inn Seaworld where they offer a discounted rate for patients of Excel Hospital (must be requested). The hospital driver picks them up the next morning at 7:00 AM in the lobby and drives 20 minutes to the hospital. This first "hospital" day (#2) is for testing, where patients need to remain NPO (nothing by mouth) after midnight the night before. (The guest will stay in the same room for the duration at a cost of $75 per day for meals, etc.) All tests and labs, including 64-slice CT scan* with contrast, and consultations with seven specialists in: Internal Medicine; Cardiologist; Opthalmologist; Neurologist who believes in CCSVI; General Practitioner; Cardiothoracic and Vascular Surgeon; and Radiologist is on this first day at the hospital. These tests will be discussed at a consultation later that same day (#2), followed by an overnight stay in a private two-bed hospital suite with transportation to the airport in the morning of day three (#3). We ask that flights are made around 12-1pm to be able to have the patient at the airport in time.

OR - If the patient desires treatment because they have spoken with Dr. Hernandez (as in my case) before arriving at Excel Hospital, the cost is $6,900 for "venoplasty" or from $16,500 for "IJV re-construction surgery" of one jugular vein. Testing and/or procedures must be pre-paid in full by wire or credit card one week prior to arrival at Excel Hospital. You will probably go to LaQuinta "Old Town" Hotel or Days Inn Seaworld where they offer a discounted rate for patients of Excel Hospital (must be requested). The hospital driver picks them up the next morning at 7:00 AM in the lobby and drives 20 minutes to the hospital. This first "hospital" day (#2) is for testing, where patients need to remain NPO (nothing by mouth) after midnight the night before. (The guest will stay in the same room for the duration at a cost of $75 per day for meals, etc.) All tests and labs, including consultations with seven specialists in: Internal Medicine; Cardiologist; Opthalmologist; Neurologist who believes in CCSVI; General Practitioner; Cardiothoracic and Vascular Surgeon; and Radiologist is on this first day at the hospital. Day three (#3) is a 64-slice CT scan* with contrast and consultation with Dr. Hernandez to review studies. The venoplasty or surgical procedure is on day four (#4). Then the patient will REST on day five (#5) with post-op testing and consultations on day six (#6). Transportation will be provided to the airport the following morning (#7). We ask that flights are made around 12-1pm to be able to have the patient at the airport in time.

*[A 64-slice CT scan is a tri-dimensional (3D) CT scan (very few available) which is cutting edge technology that allows the experts to view all of the patient's unique anatomy.]

THREE MONTHS LATER surgery on the other side (if needed) may not OR may be scheduled for an additional $14,500. There will be no need to repeat the CT Scan. This is the typical routine yet there can always be exceptions.

I highly recommend starting with the $2,500 CCSVI testing outlined on my personal website ( www.ccsvi-ms.blogspot.com ) because I feel it would be easier to request "procedure funds" after tests confirm what is needed. The $2500 amount will be deducted from the procedure if you decide to return for treatment and if you need time to collect funds. Or you will be provided with the test results if you desire to be treated closer to home.

I asked Dr. Hernandez if he could bypass the vertebral compression, but there is an issue with collateral veins in my head. I must wait for results from studies regarding unblocking the brain veins with stents because the FDA won't approve it, and Excel Hospital no neurosurgeons with enough experience, yet.

NOTE: United States patients require a photo I.D. by state and a birth certificate to receive a "special medical pass" issued by the state of Baja, CA through Excel Hospital to get back into the states. Passports aren't always needed, but citizens from other countries can go to http://www.rushmypassport.com or Canadians can Google "rush passport Canada" to locate companies who provide assistance.


✿ ✿ ✿ GOOD LUCK! ✿ ✿ ✿

As of September 2013, crocheting hanging towels is what I'm doing to promote CCSVI-MS while waiting (2+ years) for a study to be completed and published. Then the FDA may stop saying "CCSVI is too controversial" to allow a neurosurgeon to look at what's happening in my brain. I've asked Excel Hospital to help me, but even if I paid them to do a CT of my arterial and venous function of my head and neck, they don't have enough experience to fix it. I keep busy crocheting while waiting. "tum-tee-tum"

2 Comments:

At April 19, 2014 at 9:56 AM , Blogger sathyam shonkho said...

This comment has been removed by the author.

 
At February 13, 2016 at 8:29 AM , Anonymous Debbee Clar said...

thanks for all this info, Kathleen! I have lost my legs here in AZ, but I get around and wish for a Miracle Cure. I am trying Acupuncture.

 

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