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My thoughts about chronic cerebrospinal venous insufficiency – CCSVI and liberation treatment November 23, 2009

Posted by Rebecca Hoover in Diet - the right diet for MS, what you need to eat.
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Hope is almost always realistic. Be bold! Hope! Be smart and take action!

The chronic cerebrospinal venous insufficiency (CCSVI) theory and related liberation surgery (also a procedure) to remove blood vessel blockages have spurred great hope for those with MS. It is my belief this hope is well-founded but it is important to pay attention to two issues. First, it is important to understand what the blockages mean in practical terms. Second it is important to understand what additional treatment is likely to be necessary even if the surgery or procedure can be used.

CCSVI essentially identifies blockages in blood vessels as a problem causing MS symptoms. This is not the first time, however, blockages have been identified as a problem in MS. Roy L. Swank, M.D., a professor emeritus of neurology and world wide expert in MS, long ago stated that blockages caused by saturated fat were the cause of MS symptoms. In fact, Professor Swank identified blockages not in larger blood vessels but in very small blood vessels surrounding the brain and spinal cord. Also, many articles in medical journals have discussed vein problems related to MS. For example, some articles point out that problems with small veins in eyes seem to precede optic neuritis in MS.

The widespread nature of blockages suggests the second issue. Even if blockages are leading to MS symptoms, the blockage problem is probably far more widespread than can be surgically corrected in full. This means that diet, exercise, etc. changes will still be needed to prevent future blockages and help treat the many thousands of current blockages too small to be surgically corrected. These self-help changes are not surprising because they are also required to treat some heart problems and varicose veins which also involve blood vessel problems.

The likelihood that dietary changes, for example, will continue to be important in managing MS is highlighted by a study released in 2009 from South Africa that showed that saturated fat in the blood of those with MS is related to the severity of MS symptoms. The study showed that as saturated fats in the blood increased, MS symptoms and disability also increased. Those with lower levels of saturated fats in their blood had fewer MS symptoms and lower levels of disability. Given this, we all obviously want to keep the level of saturated fat in our blood as low as possible.

It should be noted that it appears that poor diet, including too much saturated fat and not enough healthy foods such as fish, fruits and vegetables, contributes to both blood vessel problems and MS. Accordingly, if one wishes to address both blood vessel problems and MS, diet is the place to start. A healthy MS diet is key.

The so-called CCSVI liberation surgery or procedure is being conducted in two ways. In Italy, a Dr. Paolo Zamboni is using balloons to stretch only a very small number veins that are supposedly too narrow. At Stanford University in the United States, Dr. Michael Dake used stents to open the veins. The jugular veins in the neck are often opened using one of the two methods as is the azygous vein which drains blood from the chest and abdominal area. The method used by Dr. Dake causes more pain than the method used by Dr. Zamboni. Also, the use of stents is high risk. One woman in her 50’s died from a stroke shortly after Dr. Dake performed his surgery on her and gave her blood thinners. In another case, the stent Dr. Dake placed in a man in his 20’s slipped out of placed, traveled to his heart and required emergency open heart surgery. After these two incidents, Stanford stopped the experiments conducted by Dr. Dake.

The article on liberation surgery published in December 2009 suggested the surgeries done in Italy may provide relatively modest improvements, contrary to initial hopes for major improvements. For example, the rather poorly designed study (it was not blinded) did not show statistically significant improvements in post-operative relapse rate. The article did state that post-operative Multiple Sclerosis Functional Composite scores that measured disability had statistically significant improvements. Likewise, the number of patients with relapsing/remitting MS who stayed relapse free increased but re-blockage of the veins “liberated” often occurred within 18 months. The CCSVI procedure seemed to offer little benefit for primary and secondary progressive MS.

In summary, the procedure seems to offer fewer benefits than a recent study showed for patients receiving Vitamin D3 supplements of 14,000 I.U. each day. Unfortunately, the design of the Zamboni study needs to kept in mind as well. The study design was problematic enough the benefits that were found may not stand the test of time. Future studies may not be able to show the surgery produces the claimed benefits.

It should be mentioned that the modest benefits that may be provided by the procedure are not surprising. Since vein problems in MS are widespread, unblocking a couple of large veins would probably not solve the overall dysfunction in MS.

Much more research on the liberation procedure and whether it can actually help reduce MS symptoms is needed. The great benefit of the study is that it focuses attention once again on the role of veins in MS disease process. Therein lies our hope.

While all of us wait for additional information on CCSVI surgeries, we all can take steps to decrease blockages right now. The best non-surgical method that I know of to do this has been suggested by George Jelinek, M.D., a professor of medicine from Australia. His website Overcoming Multiple Sclerosis still offers important and timely information for those with multiple sclerosis. Taking the steps recommended by Professor Jelinek will help prevent and resolve blockages.

It is wonderful to have a new focus on hope for those with MS. At the same time, it is important to remember that many who have never had a CCSVI procedure are living full and vigorous lives, with no visible disability despite having MS and not taking any MS medications, There has been far too much emphasis on doom, gloom and pessimism. Let’s all hope the possibility of surgical treatment will spur those all with MS to start making the diet and other lifestyle changes likely to be needed to help heal MS. We all need to grit our teeth and promise ourselves we will make the lifestyle changes that scientific studies show will probably help us heal or keep us healthy. Hope, it seems, generally comes with some effort.

Please let me know if you find my blog helpful. Please add a comment. What did you like? What would you like added? Thanks! Together we can change the way the world views MS. Please also join the Intelligent Guide to MS page on Facebook. I will use that page to make timely posts on new research and other issues likely to be of interest to others.

Please remember to consult with your doctors about how to stay as healthy as possible. Nothing here should be interpreted as medical advice. Instead, please use the information you find here in your discussions with your doctor.

Copyright 2009 Rebecca Hoover

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Comments»

1. George Jelinek - November 27, 2009

That’s a great blog Rebecca. As you say, even if the CCSVI theory proves correct, we still have to tie it in with everything else we know about MS: the latitude gradient, why immune modifying drugs seem to provide modest benefit, the effects of healthy fats, and so on. It may well be for instance that the Epstein-Barr Virus causes some inflammation of veins around the brain, which, in combination with high saturated fat intake, causes narrowing of the veins. Vitamin D and the immune drugs may well then be of help in modifying the immune response to the build up of pressure and iron deposition in the brain. There is so much still to learn! But we know what works: diet, vitamin D, exercise…… It is important to take responsibility, and take control.

Be well

George

2. julie calder - November 27, 2009

Maybe CCSVI treatment with angioplasty should be limited to only those who are prepared to modify their diets, otherwise it’s going to be a waste of time and effort! At least everyone should be told about the lifestyle changes they need to make. Excuse me for playing devil’s advocate……
Cheers
Julie

Patricia Cocklin - December 5, 2009

Lifestyle changes in diet are really common sense.
I have had MS for 6 years now. I have changed my diet, my life, but this Vascular surgery makes complete sense to me.
We all know that blood circulation plays a huge roll in MS.
I had restless legs as a child, my Dad and Brother both died at an early age of heart disease. Again a circulation problem.

Lifestyle plays a big part, but so doew heredity!

I just want a quality of life without constant pain before i die.

Death comes to us all, but if i could just have some years of quality before I die.

But, having said all that, I do have hope. My Hope is in the Lord, Jesus Christ!!! He is the Hope of the world!!!!

3. Rebecca Hoover - December 5, 2009

Patricia,

You are smart to notice the relationships between MS and cardiovascular disease. Professor Swank noticed this relationship too. In fact, he found that as saturated fats in diets increase, both cardiovascular disease and MS increase. In fact, when plotted against dietary increases in saturated fats, both cardiovascular disease and MS increased at about the same rate. This seems too coincidental. It appears there is some relationship between cardiovascular disease and MS.

When a study was done in Scandinavia in about 2003, the researchers found that as total cholesterol and LDL increased in newly diagnosed MS patients, so did the number of MS lesions visible on MRI images.

I agree with you that Zamboni’s liberation theory makes some sense. It does not seem like it is the whole picture, however.

In the meantime, I’ve been sitting here today trying to figure out how to lower my LDL cholesterol even more although it is quite low as it is. I’m also trying to figure out how to get more saturated fats out of my diet because research shows they limit the ability of the blood vessels to dilate. Some blood vessel friendly foods include walnuts. High antioxidant fruits and vegetables are blood vessel friendly too.

Good luck with the MS! Hang in there and follow a healthy life style so you stay as healthy as possible. That will help the MS.

Rebecca

4. Bert Farrell - December 16, 2009

Good God if this treatment helps one person trapped in a body that doesn’t work it is worthwhile!!!

Just ask someone trapped in that body and they will tell you.

It is so easy as a healthy doctor to comment but if you were stuck in a body that doesn’t cooperate you would be jumping so quick to try this out!

Strap yourself to a chair for a week and then tell me you wouldn’t try it. Walk a mile in someone elses shoes and then give all the but this an but that crap!

Again if it helps one person……….. ooops it has already help many.

Rebecca Hoover - December 16, 2009

Patrick,

I am glad you are fired up about CCSVI surgery and ready to fight for it. Good for you. You should know, though, that I am NOT a doctor. I am just another person with MS and I know what it is like to have problems walking. I also know what it is like to go blind an eye. I am one of those people in an MS body.

I also know that a lot of incompetent doctors have claimed to have great cures for MS and made a lot of money off of these cures. That is why CCSVI surgery needs to be tested and proved effective by honest, impartial studies.

All the best,

Rebecca

5. Evelynne McCormick - February 5, 2010

Diet and VItamin D/Omega 3 works. I have been diagnosed since 1982.I had 2 small children at the time and a year old baby when I collapsed the day after a fire in my house. I was taken to the Western general hospital and immediately diagnosed with M.S as I couldnt walk in a straight line. and had horrendous shingle -like pains in my breast.(I had shingles twice as a teenager when my parents marriage broke up.) Thankfully,my doctor was on the ball and as soon as I came out of hospital,she, full of positivity which in itself probably was so healing, gave me all the great recovery books by Swank, Judy Graham,Roger Mcdougal etc. I have been on a dairy -free,gluten -free,high fish oil diet ever since with Vitamin D 2k an high omega 3 added on as I learned about it. I now am also on LDN 3mg a day to help my immune system and I do thank God and that wonderful
Edinburgh doctor,now deceased unfortunately, that at 60 I am still walking and working as a special needs teacher I do get very tired after a days work and my balance is not very good as my knees are stiff,but maybe I need to start doing exercises,although the long corridors at school certainly help I’m sure.

Rebecca Hoover - February 5, 2010

Hi, I’m glad you’ve had good luck with a healthy diet, etc. Many others have also. A medical professor from Australia recommends taking about 5,000 I.U. of Vitamin D3 each day. I hope you are getting enough vitamin D3. Also, as we get older, we do need to do some stretches. I try to do hamstring, calf and Achilles stretches everyday–they help keep the legs nice and flexible.

With respect to balance, leg strengthening exercises help. For example, I do squats three times a week as well as an exercise that involve standing on tiptoes on one foot for five seconds twenty times and then repeating this with the other foot. Of course, when doing this latter exercise, it is necessary to hold onto something to maintain balance. The research shows other weight training and strengthening exercises also help. I do an weight/strengthening set of exercises that takes about 30 minutes three times a week.

Helen Mirren is a great inspiration to me because she looks so great at about age 65. I think it is possible for us to be in great shape too. Exercise is some work but research shows things like strengthening and aerobic exercise help with fatigue. Those with MS who exercise sleep better, have better cognitive skills and have less fatigue.

Best wishes! I’m glad you had a positive doctor too. A positive doctor makes all the difference in the world.

6. Evelynne McCormick - April 5, 2010

Excellent article. I believe Dr. Jelineks dietary advice plus high vitamin D will help all sufferers. My non-dairy, non- gluten diet has kept me well for 27years.

7. Barbara Clark Moore - April 24, 2010

Great Evelynne!

8. marsha - May 30, 2010

Long live CCSVI Liberation! Had it yesterday and feeling great!Had severe blockafe in right jugular and in azygos vein, Now I can return to gym and have enogh energy to stand in kitchen to create healthy meals. Other than MS, I am perfectly healthy. Never had cholesterol and am a vegan!

Rebecca Hoover - June 8, 2010

Marsha, I have heard mixed reports on the results of the CCSVI surgery — some say it helped them and others say it made no difference at all. Of course, we need real scientific studies to find out if the surgery is really working or folks are just experiencing improvements because of the placebo effect. All the best. Please let us know in six months if you still think the surgery helped.

9. Dr. Michael Flanagan - August 30, 2010

I completely agree with Dr. Zamboni’s theory on the role of CCSVI in causing MS. What’s more, it is something I have been writing about for well over twenty years now. I disagree Zamboni, however, on the cause of the CCSVI, which he attribute to stenosis in jugular and thoracic veins. In contrast to Zamboni, I believe that the cause of the CCSVI is due to back pressure against the vertebral veins, which are used by humans to drain the basement of the brain during upright posture.

For further information and an alternative view on CCSVI, please visit my website and let me know your thoughts, questions and comments.

Rebecca Hoover - August 31, 2010

There certainly are a lot of theories about what causes MS. I noticed you are a chiropractor and chiropractors, like many others, have come up with quite a number of theories over the years. There have been all kinds of theories from all over. Since theories are so easy to generate, we all need to wait for some real scientific research on Zamboni’s and other theories. As you know, few of the many theories generated are ever actually tested. Some of this is occurs because those with MS get tired of being guinea pigs and it is not always necessarily to find individuals willing to participate in some of these experiments. There are always risks involved.

10. Peggy Fisher - September 3, 2010

Has anyone investigated the difference in the arterial and venous stenosis in M.S. General cardiovascular disease and the healthy eating, omega 3’s etc are aimed at reducing arterial fatty deposits. Is there evidence of increased narrowing in the arteries in M.S. or is it specifically venous.

Rebecca Hoover - September 4, 2010

The whole issue of venous stenosis is still quite controversial. Some say that the stenosis that is being found is not real; others say that venous stenosis is real. I do not believe, however, that the plaque that causes narrowing of arteries is also founds in veins. If the veins are narrowed in many MS patients, and there is no concensus they are, something other than plaque is causing the narrowing.

Also, a long time ago, Dr. Roy L. Swank, a professor of neurology pointed out that there is a relationship between cardiovascular disease and that where there is a lot of cardiovascular disease, there is also a lot of MS. This means it could be that the same things that are causing cardiovascular disease are also contributing to MS. This does not mean, however, that there is actually anything wrong with the veins of those with MS.

At this time, there are vigorous debates occurring around the issue of veins and multiple sclerosis. We won’t have the answers until more research is done. One study scheduled to be completed at the end by 2011 should provide a lot of these answers.

11. Mark Taplin - October 11, 2010

I have had MS for about 8 years. I am trialing FTY720 for 3 years and my EDSS is still at 2.5. I have a resticted RHS jugular, and I noticed my symptons improved when I am at altitde. I emailed Zamboni, and it seems his procedure has the same affect. The altitude distends the veins in the head, the same way a packet of chips blows up. I think the latitude thing about MS has more to do with the higher air pressure at sea level, and the fact that the tropics have low air pressure, than further vfrom the Equator. I am fit, slim, and always watch my diet. My auntie died of MS, my father also has a restricted RHS jugular, my brothers have auto-immune diseases, as does my sons. CCSVI is just common sense…

Rebecca Hoover - October 16, 2010

Mark, I am not sure that what Zamboni calls CCSVI does make sense as a cause of MS. There are many who have veins in the condition described by Zamboni who do not have MS so I am not sure that correcting the vein issues would have an impact on MS.

I do know that I am very disappointed at the slowness to fund needed CCSVI related research. Because so many hope that CCSVI procedures will prove to be a good treatment for MS and are spending thousands of dollars for these procedures, the MS societies really need to get this research done as quickly as possible. It would be a shame if families spent their all of their savings on the CCSVI procedures for those with MS if the research shows later that the procedures are not effective. This scenario is entirely possible because many who have had the procedure report that it did not help them.

I still think our best bets at this time involve using lifestyle improvements. Let’s hope the MS societies start acting a bit more responsibly and get the needed research done.

Mike Fisher - May 17, 2011

I do agree with your, sensible approach Rebecca

12. jessica forester - November 30, 2010

The CCSVI Liberation Treatment could be the cure but fact remains that the rate of re-occlusion is stuck at 50% and MS patients being treated in the European and Asian countries end up suffering as they did, 3 months ago. While Big Pharmaceutical Corporations and governments in the US and Canada are coming up with new ideas to stop any advancements to the CCSVI theory (Like the superbugs, etc.), millions continue to travel to countries like India and Poland to get this simple procedure and no valuable data is recorded to support the CCSVI theory. Unless we get our position strong enough to support the CCSVI Theory, we will never be able to beat the Pharma Corporations or start the treatment here and many will keep suffering and dying even after having the procedure done. I lost my elder brother last month because of a blood clot in his stent. He got liberated 5 months ago in Poland. We need to prove to the government that this works. Non-profit organizations like the CCSVI Clinic are tirelessly working to develop safer protocols with teams of world renowned surgeons even though they are feeling the negative pressure from you know who. This Atlanta based Organization has started Clinical Trials for CCSVI and we need to support these groups because they are our only hope to fight for the truth. Without the valuable data that they are collecting offshore, the procedures will not be allowed here, in our own countries.

Rebecca Hoover - November 30, 2010

Jessica,

I am very sorry to hear about your brother.

I encourage everyone to avoid the CCSVI procedure until needed research has been completed. At this time, there is no research showing the procedure provides real benefits and there is insufficient research into any procedures needed to ensure safety. I am disappointed that the MS societies have been slow to fund needed research. Neither patients nor doctors will be satisfied for long basing their decisions on conflicting opinions.

13. Tonie Turner - December 2, 2010

Excellent blog Rebecca….
Interesting eighteen months..Well my CCVSI operation is this December 13th…My full intention is to beat that so called 18 months…and make for the rest of my life. I will be deligent in exercise, diet and stress…. I have MR R&R.no meds just alternative therapies….
My suggestion for an addition to your blog is found out how many of us have done the operation and somehow found out how we are all doing…I just entered my name into the CCVSI TRACKING…

14. Daniele - June 4, 2011

Your article was really right. I’m a MD and I’m affected by MS. I’ve been liberated with CCSVI just 1 month ago. I’m feeling better and better. I want to focus on the importance of the diet that must have less saturated fats as possible and must be based on vegetables, fish, no meat, no cheese. I agree with you about the importance of exercise (and I say everyday exercise). CCSVI arrests the progression of the disease, but the recovery depends on you, because you have to reach your limit and overflow the limit.

WE CAN DO IT


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