I downloaded an app on my iPad called Flipboard. With it, I can bookmark favorite feeds so recently I've bookmarked a few regarding Multiple Sclerosis. Below is a feed that I found today talking about the work of Dr. Zamboni.
I haven't decided what my opinion is about this theory. I tend to be skeptical of homeopathic or alternative therapies. I'm not sure if this is a positive or negative thing, but I'm interested in reading about different theories.
Multiple sclerosis, CCSVI and Balloon angioplasty
With the eagerly anticipated research studies on the role of CCSVI in Multiple Sclerosis, and clinical trials evaluating balloon angioplasty as a treatment for CCSVI and Multiple Sclerosis underway, there finally seems to be a positive step in the direction of this controversial therapy. One which many Multiple Sclerosis (MS) patients and caregivers have anxiously been waiting for a medical verdict on.
Indeed the technique has started to be called “Liberation Therapy” by many in the Multiple Sclerosis community.
Multiple Sclerosis, widely thought to be an autoimmune disease, although it hasn’t been proven as such, is a chronic disabling neurological disease that attacks the Central Nervous System which is made up of brain, spinal cord and optic nerves.
In 2008 Dr Paolo Zamboni, a vascular specialist put forward his theory that Chronic Cerebrospinal Venous Insufficiency, also known as CCSVI is the causing factor of Multiple Sclerosis. Chronic Cerebrospinal Venous Insufficiency (CCSVI) is a condition with a compromised flow of blood in veins draining the central nervous system. Dr Zamboni also suggested an endovascular treatment called balloon angioplasty to remove these blockages.
Dr Zamboni’s theory and suggested treatment immediately generated tremendous amounts of hope and interest amongst MS sufferers and carers.
However, much of the medical community around the world have so far only been hesitant and sceptical, snubbing Dr Zamboni’s theory and the treatment, labelling them as medical myths. The procedure has been banned in other countries and the medical advisors are waiting for rigorous clinical trials to produce sufficient evidence to support it. However, despite the claimed risks and medical concerns surrounding this line of treatment, this procedure is already being performed privately in 40 countries, and is allowed by Kuwait’s medical authorities and paid for by their State financed health system.
It may be interesting to take a moment here to note, that many critics of Dr Zamboni’s CCSVI theory and treatment are involved in research studies relating to such drug related therapies for MS. What is also strange is that most research studies for Multiple Sclerosis seem to be concentrated towards slowing down and controlling the MS, making the disease more bearable, more manageable and the symptoms milder instead of preventing or curing it altogether.
The very powerful pharmaceutical industry does business of over $8 billion per year, selling MS drugs that control the disease but not cure it. People are beginning to ask if this MS “industry”, worth over $10 billion a year might be interested in maintaining the status quo?
What are your views on the subject? Feel free to share your story and add links to useful sites as well as upload any relevant videos.
Read our other article on this subject or visit our website on Multiple Sclerosis Information
I've had the CCSVI angioplasty procecedure twice with wonderful results. After living with MS for over 23 years, mostly going downhill, especially in the last 36 months, this treatment was a breath of fresh air for me and changed my life.
I've tried most of the "DMD drugs" --I even had to take Avonex and Copaxone as a double therapy because I was progressing so quickly. But even that wasn't helping much. I think that was God telling me He had something better in mind, something called CCSVI.
I pursued it with a vengence, learned everything I could and went for it. Boy, am I glad I did.
Nothing has helped me the way this simple angioplasty treatment has helped me. My debilitating fatigue which ruled my life in 2-3 hr segments in-between naps for the past 10 years has vanished. My chronic head pain (pins and needles all over) is pretty much gone. My walking is better, balance better, cognitive function better, slurred speech gone, improved bladder function.
I stilll have numbness in other parts of my body, but that is from MS damage that was done from the disease progressing over the years. I would have never dreamed in a thousand years that I could have a "life" again after so many years of spiraling downhill, while my neurologist just tried drug after drug to no avail. He told me not to pursue the treatment because it was to dangerous. I defied him and now, even he cannot believe my improvements.
Since my angioplasties, my MRI's remain clean with no new plaques. The more I read about the vascular component of MS, the more I am convinced that MS is not an "autoimmune disease" that falls into the same catch all category like so many other illnesses, but rather, is a vascular disease that can be controlled by improved blood flow, endothelial health, and exercise.
I continue to take my Copaxone, although I'm not sure why. Is it helping? Or am I just scared to stop it because of years of conditioning by my various neurologists in different states. I live now with emboldend purpose and control over my health like never before. Gone are the days of "doctor knows best." Not for me. I am my own best advocate now and it will remain that way until I leave this earth.
I've felt better these past 13 months since I had the CCSVI treatment than I have in at least 3-5 years. My improvements have been dramatic and have given me back a quality of life that I only dreamed about in the past. CCSVI truly is a miracle from God.
I am so grateful to Dr. Zamboni and his colleagues for thinking outside the box and giving us this new hope for improvement in our MS. Something we thought was never possible as we progressed down the slippery slope of a chronic progressive disease like Multiple Sclerosis.
My mission in life now is to spread the word about CCSVI. I am on the patient advisory board of the non-profit organization CCSVI Alliance, formed by MS patients in Feb. 2010 to help others learn about CCSVI and help them take their health care back into their own hands. I pray that I will be able to help others learn about this simple treatment that could possibly improve their lives too. Contact www.ccsvi.org for more information on CCSVI.
The internet and social media is changing the world. Read and educate yourself about this amazing treatment for MS through the massive amounts of information now available to you. I don't think you'll be disappointed.
Yesterday, 8:51:27 PM EDT – Like – Reply
I had a balloon angioplasty at Ameds Poland, in August 2011. Having had PPMS for the pass 20 years I felt I had nothing to loose and possibly something to gain.
Im pleased to say I have been delighted. My mobility is still very shaky but I have stopped choking, headaches have ceased, slurring words less and generally more motivated.
The dreadfull brain fog is begining to leave me and plan to go back in Feb for a check up and possibly a repeat angioplasty.
Follow my CCSVI journey and overall MS digest at bettebravoblog.blogspot.com
We all need to share , spread the word.
Yesterday, 7:30:25 AM EDT – Like – Reply
I'm keeping an eye on it
Yesterday, 7:30:07 AM EDT – Like – Reply
It is great that the topic is discussed, but I believe that the goverment shoul have control. I wish they will stop calling controversial therapy. Neurologist want to have an exclusive control of Multiple Sclerosis and other health conditions should be evaluated. Here in the United States should learn from the experiences of other countries.
Yesterday, 7:15:42 AM EDT – Like – Reply
CCSVI Angeles Health
RT @MS_getinformed: Discussion blog on multiple sclerosis and CCSVI is still up. It would be great if you contributed!
Yesterday, 6:28:50 AM EDT – Like – Reply via Twitter
Just to let you know our discussion blog on multiple sclerosis and CCSVI is still up. It would be great if you...
Yesterday, 5:29:07 AM EDT – Like – Reply via Twitter
RT @MS_getinformed: Multiple sclerosis and CCSVI - come over and have your say!
August 5, 2011, 2:32:39 PM EDT – Like – Reply via Twitter
Multiple sclerosis, CCSVI and Balloon angioplasty « The Patient Experience
August 5, 2011, 5:19:26 AM EDT – Like – Reply via Twitter
well I went to Sophia, have had some significant improvemnets, didn't expect a miracle cure.
July 7, 2011, 3:02:37 PM EDT – Like – Reply
May 16, 2011, 7:40:31 AM EDT – Like – Reply
another success story in the press !
March 29, 2011, 6:44:26 AM EDT – Like – Reply
Hi again all. I thought that some of you may be interested in reading a local newspaper story about my forthcoming trip to Bulgaria.
Yours in wellness
February 25, 2011, 8:23:12 AM EST – Like – Reply
Thank you So Much, Irishbear, for getting the word out about CCSVI--! I am waiting for my 2nd procedure next month in Calif., as my azygos vein was not addressed the 1st time.
February 24, 2011, 10:53:53 AM EST – Like – Reply
Dee - I take it you're going to Pacific Radiology? Is he checking your hemiazygos also? What do you mean that your azygos wasn't treated the first time? It wasn't ballooned? It wasn't stenosed? How is your walking? Is there an airport near that facility?
Hi Jackie, sorry it took me awhile to find this place again. The John Wayne Airport is just up the highway from the Pacific Interven. clinic & Rennaissance Surgical Center. I pushed for the clinic staff to bill Medicare, so I had to have my procedure done thru the Fountain Valley Hosp. a few miles away. I had my 2nd procedure in March 2011 and Dr. Arata wants me to come back. He opened my azygos and right IJV but not the left. My left side may not have an IJV, nly collateral veins, So Dr. Arata wants to go in thru my shoulder and IF I have an Intewrnal Jugular, he will clear it from the top down--WITH the flow of blood. This is scheduled for May13th. P.S. Dr. Arata says he "tears" the blockages open so they will not re-stenose.
April 29, 2011, 12:18:07 AM EDT – Like – Reply
I saw the Montreal conference in April and had a real hope for the first time since I was diagnosed in 2000.
I saw my neurologist and he claimed he had had never heard of it, ( this is in 2010!) and dismissed my copy of Dr Simka's protocol as 'not a proper medical paper'. I persevered and saw my GP and he got me an appointment with a local specialist who laughed at the idea that I had been able to get anything worthwhile from the Internet, and he promptly did less than half of the protocol and pronounced that my veins were perfectly clear. This was devastating, the only thing I consoled myself with was that the had not done the job properly, and so his result was also faulty. After many weeks nursing a bruised ego, I went back to my GP and recited the story. He said, the only thing that will satisfy you is if we get you an appointment with Dr. Franceschi. He duly did and three weeks later I went to Paris (I live in Brittany) and had the examination from Dr.Franceschi, who says that both my vertebral veins are blocked! Result at last! Unfortunately, the operation is on hold in the French medical service and although Dr.Franceschi has put me on his list for surgery as soon as the ban is lifted, I could have to wait for two or three years, or convince someone to give me the money to fund the procedure.
The doctor is confident that the ban will be lifted and is sure the benefits to MS sufferers will soon be clear.
The only people who do not appear optimistic are those who will loose part of their patient base like my neurologist, the drug companies and the MS Society itself, which will have no reason to exist if there is an effective treatment.
But its my body which is suffering and my friends and family who are having to endure this disease.
How dare anybody delay a treatment for this illness just so they can continue to amass fortunes from this situation?
February 24, 2011, 10:04:35 AM EST – Like – Reply
not sure ccsvi is a good thing as a former nurse not sure fiddling with veins and arteries in neck is something i want to fiddle with,having been a nurse in i.c.u. and vascular surgeons office. this is a temporary solution i think..
February 23, 2011, 12:57:39 PM EST – Like – Reply
Have been informed by the BBC today that the programme planned on MS for 28th at 7.30. has been postponed to Monday 7th March at 7.30. BBC 1 Southwest or Sky channel 987 or the BBC i-player.
There is another programme on on MS on BBC Alba on the 28th Feb at 9.30pm, Sky channel 168 or again, the i-player.
CCSVI is discussed in both programmes along with all the naysayers!
February 23, 2011, 10:54:57 AM EST – Like – Reply
Is this the correct programme?
March 9, 2011, 9:30:02 AM EST – Like – Reply
I had a very interesting email today from BG Medical Tourism, Bulgaria, who I am organising my treatment with. This may well be of great interest to some of you.
Everyone in the UK who books for their CCSVI diagnostic and treatment package with them till 31.03.2011 will make benefit of a 1000 euro discount (that's £840), making the treatment 5000 euros instead of the usual 6000. If you are lucky enough to get the treatment in Scotland it would cost at least 9000 euros (not including accommodation).
As well as the treatment etc, the price includes (amongst other things) a 5 star hotel and an English speaking companion throughout your stay.
The date of the CCSVI package can be later in spring or summer, but booking and downpayment should be made before 31.03.2011.If you are interested, you can check details via the website at:
http://www.ccsvibg.com, or contact Irina, the Western Europe Sales Manager via email:
Good Luck all.
Yours in wellness.
February 23, 2011, 8:36:06 AM EST – Like – Reply
Hi Paul, thanks for the info but would just like to add what is just my personal opinion... decisions should not just be based on cost - people MUST research whichever doctor is doing the procedure and RESEARCH RESEARCH and try and speak (really speak) to others who have been treated by that doctor..... either way its a lot of money and its imperative to make that money do the best job it possibly can!
February 23, 2011, 10:59:01 AM EST – Like – Reply
Has anyone heard much about the stem cell therapy, which has been in the news about how it "reverses" Multiple Sclerosis? The trials have shown encouraging results.
In the trials, they remove stem cells from the patients' bone marrow, and then used chemicals to destroy all existing immune cells in the body, before re-injecting the stem cells. These then developed into naïve immune cells that do not see myelin as alien, and hence do not attack it.
Here is the UK MS society's link about it -
Further information on this link -
What do you think?
February 23, 2011, 5:57:12 AM EST – Like – Reply
I was diagnosed with MS in 1999 and, contrary to my Narrow Minded, NHS Employed, Pharma Sponsored, Spotty Bow Tied Neurologist's advice, am off to Bulgaria this Sunday to undertake a dopplerscan and hopefully 'Liberation' procedure.
My Neurologist (who, you may have noticed, I don't have a lot of time for), has tried every trick in the book to try and put me off going - pointing out expense and safety issues as two of him main 'concerns'. But as I pointed out to him, in 10 years he hasn't been able to help me in any way. Thanks goodness for my WONDERFUL MS nurse who has always had a very open mind and has always been understanding and supportive of anything that I wanted to try, including LDN.
I have been on LDN for the past 11 months but haven't seemed to get on very well with it at all so I am really excited about this treatment, especially after reading some of the stories here, and excited that I may regain some at least, of the life that I have lost since I was 29.
I will return to this page after the treatment and 'report' back about my experience.
February 22, 2011, 5:53:39 PM EST – Like – Reply
February 22, 2011, 6:18:01 PM EST – Like – Reply
Really loking forward to hearing your expereince of angio
Can I ask how much the operation costs in Bulgaria?
February 23, 2011, 4:29:17 AM EST – Like – Reply
I was liberated in Oct.....the best thing I ever did...Paul be prepared you may need this done several times..and that's OK.Good Luck my MonSter fan ♥♥
February 23, 2011, 7:03:18 AM EST – Like – Reply
Best wishes Paul! I can't wiat to hear about your results!
February 25, 2011, 8:21:21 PM EST – Like – Reply
I see from Mike F's post that he was misdiagnosed before getting correctly diagnosed with MS.
On an average, MS patients get referred to 2-3 specialists before being referred to a Neurologist, and were correctly diagnosed on an average 3.5 years after the onset of their symptoms after multiple misdiagnoses. There is even a difference in the type of misdiagnosis between men and women!
- Were you misdiagnosed too?
- What was the misdiagnosis?
- How long after you first went to the Doctor about your symptoms were you correctly diagnosed with MS?
February 22, 2011, 10:00:03 AM EST – Like – Reply
Phillip David Evans
I was diagnosed in '02 and am plodding along OK.
Interesting films! As always with medical progress we stand on the brink of conspiracy theory, and certainly Big Pharma has a lot invested in *not* curing M.S. Could Dr. Z not approach the U.K NHS for an extended, medicaly acceptable trial? The NHS is ALWAYS looking for ways to save money and a significant reduction in relapses along with a reversal/halting of physical deterioration would certainly have a significant charm to the money people over here.
On another note, I didnt understand from the films but is CCSVI directly indicated by observable constriction of the jugular? Would a good first place for research be to scan all/a large number of us affected by M.S to see if this is common? I guess that Dr Z and his compadres will have thought of that.
February 22, 2011, 3:40:33 AM EST – Like – Reply
Good evening! I was dx'd back in 1994 with RRMS, although I was mis-dx'd 3 yrs earlier with what was thought to be Carpal Tunnel of my right arm/hand.
I've been on everyone of the CRAB drugs and currently on TYSABRI. After reading news clips about more cases of PML and deaths resulting from some of these cases, I am going to dis-continue the TYSABRI.
I currently have an e-mail/phone call into the facility in RI that performs the CCSVI procedure in my area;I'm from NH.
I am hoping to hear from them soon and to get the ball rolling; I need to know from them how and where do I begin.
I called my Neuro today to let her know about me dis-continuing the TYSABRI, but she is on vacation.
With the help of friends who have MS and have had the procedure, I am reading many articles and websites explaining CCSVI.
These same friends have already had the procedure done and have experienced many life-changing events!!
Thank you for listening.....
February 21, 2011, 10:52:07 PM EST – Like – Reply
I was diagnosed with MS 14 years ago and have been on betaferon for 13 years.
I had a doppler ultrasound which showed that I met the criteria for CCSVI. I showed the results of the ultrasound to my GP and he was really quite excited and without hesitation wrote a referral to Prof.K.T. (not sure wether we are allowed to use names) for a Jugular Venogram.
The day before my proceedure an extremely dejected and disappointed Prof.K.T. rang me himself to cancel, saying the medical board had suspended these proceedures wanting more research. THE DAY BEFORE. That was in July 2010 and I am still waiting.
Regardless of wether it is MS, CCSVI, or any other condition that has'nt been given a name yet, surely narrowing or blockages of the jugular veins and even reflux (blood flowing back to the brain instead of away from it) cannot be good for you. It definately doesn't sound good to me.
Why can't we be in charge of our own bodies.
February 21, 2011, 5:16:12 PM EST – Like – Reply
I went to Poland in November, very intense week + Polish cliics + hospital were an eye opener. My feet + hands warmer but as yet nothing else yet, the whole experience was hard going + took a lot out of me bt glad had done as nothing else out there for secondary MS
February 21, 2011, 2:16:08 PM EST – Like – Reply
I was prescribed rebif 4 months after i was diagnosed I was told that the symptoms were flu like and would only last a couple of months and there was no mention of anxiety being a side effect. 8 months on I was still suffering flu like symptoms and massive panic attacks My MS wasn't the problem it was the medication so i decided to come off it. I have had about 3 relapses since 2006 I know i'm one of the lucky ones and my positive atittute towards MS has been a massive plus. I think too much concentration and money is poured into disease modyfing drugs when really a cure is whats needed but like every thing else in life it's all about money. Trails on CCSVI should be done. My understanding of it is that a scan would be carried out to see if the artery/vein is narrow and the operation is carried out on people with heart problems (I may be wrong and it's probably not that simple) Only thing with MS is that there is always hope that a cure may be found but as time goes on it's just seems to me that drug companies would lose far too much money and it's obvious that they would be cynical about CCSVI.
February 21, 2011, 1:43:47 PM EST – Like – Reply
I have MS, and until recently, so do 3 of my brothers. Yesterday I discovered that a fourth brother has also been diagnosed with the disease. This means that from a family of 10, 5 siblings have MS. We are constantly told that this disease is not genetic, but how does this explain a 50% occurrence in the 1 family?
February 21, 2011, 11:33:31 AM EST – Like – Reply
Many of the "immune system" based hypothesis about MS are probably erroneous. CCSVI is a congenitral venous malformation meaning we are born with it and it IS passed on through our genes. This too is a hypothesis but from all the considerable research I have done on it over the past year, this is the only hypothesis that makes sense and explains EVERYTHING about MS including the blood brain barrier breach.
February 21, 2011, 12:08:41 PM EST – Like – Reply
This article would suggest that you are on to something
February 23, 2011, 5:17:22 AM EST – Like – Reply
just goes to show you this darn disease rycan hit anyone at any time, sorry to hear of your familys involvemebt could that mean enviro,ment is the base of the diseasem, or genetics..hmmm
March 21, 2011, 10:41:11 AM EDT – Like – Reply
It has been almost 11 months since I had the venoplasty to open my colapsed jugular veins. Thousands of MS patients have had the treatment and most have realized some benefit, however, because this is such new territory in the treatment for MS, Interventional radiologists have been finding that patients tend to re-stenose, (the veins colapse again), over time. My left jugular qould net remain open during the venoplasty despite several attempts with larger balloons so I ended up with a metal stent to keep that vein open and flowing. Now a group of Interventional radiologists at a clinic in Newport Beach, California haqve devise protocols to ensure patients will not require stents nor will they re-stenose. The protocol involves using larger balloons to stretch the rubbery veins beyond the point where they will snap back to their original colpased state. The Dr's ensure the blood remains flowing by essentially "damaging" the valve to the jugulars and azygos. In many cases the valve is not functioning properly or it is malformed or upside down and not working properly anyway. A year ago some naysaying Dr's suggested that damaging this valve would cause the inter-cranial pressure to fluctuate and increase abd it would eventually kill us. But dont worry: They came to this conclusion because they were comparing the jugular veins to varicose veins in the legs and the valves there function a whole differently than in the neck.
My symptoms prior to having the venopllasty were bladder spasms, mild cog fog, balance, spasticity in legs, head and neck, excruciating neck and head pain when I lay down, neurological pain, tremor, numbness and tingling, choking, heat intollerance, my feet were always ice cold and would turn blue, sleep disorder and foot drop. SInce my treatment I am happy to report that all my symptoms have gone. My right side of my body was more affected than my left and I still have weakness in my right leg but I have been going tp physiotherapy and the gym religiously and over the past 11 months I am getting stronger.
One thing that needs mentioning is that this is not a miracle cure for MS. It is a treatment for a venous issue, plain and simple. The better the shape that you are in prior to the treatment will dictate how quickly you will feel benefits from the venoplasty. It's like any medical procedure. If you are out of shape and not taking care of yourself it will take you longer to recover. I didnt get sick over night so I never expected to be 100% immediately after the treatment. In fact, when I went for the procedure I kept my expectations very low. I told myself that "if it just stops further attacks and progression and Im still left with my base line symptoms (noted above) I will be happy."
Some Doctors are saying it's placebo effect. I disagree. Before I went for the treatment many friends told me that when they were treated their vision improved and they no longer needed their reading glasses. I was expecting this to happen to me too. Sadly, it did not. SO if you beleive this is placebo effect how do you explain that one? One thing that I never expected to improve because I didnt realize I was deficient is my sense of smell and taste! They both improved and I had zero expectation of that happening!! SO I beleive that this dispells the placebo question quite nicely.
Now 11 months later I am ecstatic to say that I am still feeling good and I have a quality life again! I can make positive plans for my future where before I only had to look forward to a wheelchair and home care as the disease progressed. A dream of my husband's and myself was always to go and live in Hong Kong but we knew that could never be as they have no MS drugs therre and I could never handle the excessive heat and humidity of their spring and summer months. In just a few weeks we will be leaving Canada for good to move to our new home and life in Hong Kong.
Whether or not researchers find a link between MS and CCSVI is irrelevent. CCSVI is a venous disorder that involves drainage of the brain. A back up of deoxygenated blood is not healthy to anyone and Doctors in Canada recognize this as they perform venoplasties on non MS patients every day. Kidney dialysis patients suffer from colapsing jugulars and are treated with the very same venoplasty procedure that MS patients in Canada are being denied. Why is it ok to help one group of people and not another? If you would like to read more about my experience before and after treatment you can read my blog at http://www.iamsickofms.blogspot.com/
This is a link to the video neews show of my treatment in Poland by CBC The National
February 21, 2011, 11:03:13 AM EST – Like – Reply
Is CCSVI a way to "get rid" of MS? Who knows! Maybe one day somebody will discover something else and nobody will think about CCSVI anymore. But now, everybody is looking at this technique with big hopes. Indeed, in Italy (especially in the city where I live), neurologists and surgeons are studying: I have MS and they already called me to study my vascular situation. The test took 40-50 minutes, NO pain (it is a ultrasound of neck and head veins). I am waiting for results but I already know I'll have to wait for a while: since they are studying, they have to build a huge number of cases, both sick and healthy people, to check the real proportion between lesions and disease/healthy situation. At the end of the study, they have to settle down guidelines: who really needs surgery, who can wait, who should not have. It will take a while, but I can wait if this means I can recover from this disease. Of course, it is not definitive: the cause behind MS is not yet clear/discovered, so no cure at this moment. I'll wait for stem-cells therapy. Sorry for my poor English, I am Italian.
February 21, 2011, 10:58:46 AM EST – Like – Reply
Sabrina-CCSVI is a genetic venous disorder. Whether or not there is a link between MS and CCSVI is irrelevent. The veins that drain the central nervous system from the brain back down to the heart are essential to one's health.
February 21, 2011, 11:51:00 AM EST – Like – Reply