Well it has been nearly a year since the media storm erupted around the discovery of Dr Paulo Zamboni and Chronic Cerebro Spinal Venous Insufficiency, and there are very mixed reports and results thus far over the new possible treatment called “Liberation”. There are strong advocates for CCSVI and also strong anti CCSVI advocates. Some new trials have also been implemented to test this theory and more trials are also called for. Patient are lobbying strongly for the treatment as well with some influential persons in governments also calling for further research in this area, as well as some doctors. Patients are reporting in blogs, web and social pages about their experiences as well and their results after “Liberation”. Now please don’t shoot the messenger, but the messenger is reading what is out there and his interpretation of it is an unbiased opinion. The messenger’s opinion is that there is a place for CCSVI in Multiple Sclerosis and it may certainly benefit us, but to what extend we do not know, but my hopes are high that eventually it will increase the quality of life for some of us. Whether it is a cure I think only time will tell, but I would not label it as such, but rather a complication and a new possible treatment for Multiple Sclerosis, especially in the beginning stage. “Are we looking at a new cause of the disease, being vascular and not an Auto-immune disease?” I think it is too soon to jump to that conclusion as Multiple Sclerosis has all the classical markers of an Auto-immune disease and in fact research has proven this for the better part of the last fifty plus years. But it could be a new complication that can affect the disease course in many patients. Vascular connection has been studied over the last 50 plus years as well, but never before was such an interesting discovery made.
For those that happen to miss all the media hype, CCSVI is short for Chronic Cerebro Spinal Venous Insufficiency. The theory is that in Multiple Sclerosis the jugular veins in the neck and the azygos vein which drain the spinal cord, are narrowed or occluded and is causing a reflux of oxygen poor blood to the brain. It is hypothesised that this reflux is the cause of iron build-up in the brain, leading to complication in or either the cause of Multiple Sclerosis. This phenomenon was discovered by Dr Paulo Zamboni in Italy, a vascular surgeon, whose wife was diagnosed with Multiple Sclerosis. Liberation treatment consists of balloon angioplasty, in other words the veins are widened by blowing up a balloon in the affected vein opening them up. Since then a couple of vascular surgeons are offering this treatment over the world, with some even employing the use of stents, a device placed in the vein to keep it open. Dr Zamboni however does not recommend the use of stents. Also note that he is not sure if this is the ultimate new treatment, hence his call for patient to stay on their disease modifying drugs until this can be proven.
CCSVI has an important role to play in multiple sclerosis, and the various patients that reports an improvement in the symptom of the disease is a very good sign for this important new development. Most of the Relapse Remitting Multiple Sclerosis patients do report a good measure of improvement, and this lent weight to this new theory. In the case of progressive Multiple Sclerosis (SPMS and PPMS) the improvements is not that great, with most reporting little or no benefit, but this is to a certain extend expected as the damage that Multiple Sclerosis can cause is extensive, with nerve endings in the brain and spinal cord being permanently damage or lost. We might be at the dawn of a new era in the treatment of Multiple Sclerosis, especially for the newly diagnosed patient, in the beginning stages of Multiple Sclerosis and this new treatment might just hold a new promise to them of slowing down the progression of the disease, and could even benefit some of us old timers as well.
Lacking though is any long term results that can shed more light on the subject, but this is not surprising as any new treatment in medical time can take from 2- 20 years to prove or disprove itself. Patients are outraged, wanting this treatment now and refuse to wait, but this is expected as Multiple Sclerosis is a disease that drives fear into a person living with it. This has given the rise to MS organizations calling for calm until this theory is proven or debunked as such, but with any fear driven disease, patients flew all over the world to have this treatment done. This is also expected and in my opinion certain patient feels that this is there last hope and we cannot fault them for this, as they are facing a future with the probability of being disabled or is already disabled from Multiple Sclerosis. Preliminary reports indicate that it will benefit certainly the Relapsing Remitting Multiple Sclerosis patients and to a lesser extend the Progressive Multiple Sclerosis group (PPMS or SPMS). Labelling this as a placebo affect seems a bit far fetch and his figures does warrant more extensive trials.
Now the big question:” Will the theory hold or will it die a thousand deaths at the end of all the research”. My own opinion so far is it will certainly benefit some patients but there may also be certain complication in this treatment. Searching through all the patient pages there are strong indication that we might have a new form of treatment for Multiple Sclerosis, but it looks at this stage that it is only a treatment that may improve the quality of life of certain patients, and may slow down the disease to a certain extend. Dr Zamboni’s initial figures indicate that about 50% will have there jugular and azygos veins narrowing up again in the first year to 18 months. Considering that most of his results are published on RRMS patient, it is difficult to tell if this is the due to the natural course of Multiple Sclerosis. Most RRMS patients tend to relapse very little during the initial 5-10 years after the onset of multiple sclerosis and can go without a relapse for a long period of time. But added to that, his figures do point to a relative success rate in about 27% of his group. But what constitutes this percentage?” Are these patients that can go without relapse for 3 years or more?” These are questions that can only be answered by long term studies and more published results.
Reading all the patient pages it seems that most report an improvement in “brain fog”, eyesight and energy and some reporting balance and gait improvement. The improvement on the Expanded Disability Status Scale being reported is at around 1 point, but again these are patient reports and not actual medical reports. The most outstanding report is the feeling of warm hands and feet immediately after “Liberation”. Some patients report very little or no improvement, with some reporting only improvement after a couple of weeks. Most patients do not report relapses, but some do and in certain cases it is attributed to collapsing of the veins. Certain cases of relapses cannot be tied to collapsing or narrowing of the veins again, with patients reporting that no restenosis of the vein were found and it seems at this stage that you can relapse without restenosis of the veins. Sadly there are also reports of being worse of after the procedure and this a bit of a concern. This is not openly reported by the CCSVI advocates, but the reports are on the web and it is a matter of finding them. They are few but they are still out there.
There is however also the other side of reports which sounds a little far fetch, but this are very few patient reports and it is not known if we must take this with a “pinch of salt” to believe it or is it actual improvements. I am not inclined to point blank shoot these down but, but certain reports of patients climbing out of their wheelchairs and walking afterwards does tend to let me air a bit on the caution side. With Multiple Sclerosis a great extend of muscle atrophy is one of the leading causes why patients end up in wheelchair, and a “liberation” will not result in you getting up and walking immediately afterwards. These patients will need weeks of physical therapy to regain the muscle strength to walk again. This is all to apparent in brain injury and spinal cord patients who is temporary disabled and also needs physical therapy to build strength in the legs and be able to walk again. The only conclusion that can be drawn from this assumption, and I apologise for being very straight to the point here, is perhaps sensualisation and attention seeking from these patients. Whatever the case is, liberation will not result in a miracle “I can walk again”, as this goes against any medical evidence. This can only be believed if in case where the patient underwent physical therapy afterwards, but that gives rise to a new question. “Is it a case of practice builds strength or is the actual strength regained from Liberation?” This is another question that needs to be answered by further studies.
Getting back to the feeling of warm hands and feet, this was noted by Dr Simka a pioneer in the field of CCSVI as perhaps an Angiotension effect. Angiotension II is responsible for the body’s temperature, and altering the blood flow to the brain can increase this, hence explaining the feeling of warm hands and feet. As for the general feeling of well being it could be a direct result of “Liberation” and repairing the blood from the brain, stopping the reflux of oxygen poor blood in the brain. But again, we need a lot of studies in this area, as Angiotension could also play a roll in this as well. This is not only my feeling, but is also the feeling of Dr Simka. Fatigue in multiple sclerosis has still a relatively unknown cause, and correcting the blood flow from the ventricles in the brain could certainly have an effect on this, but the fact that some patient reports an immediate improvement of “brain fog” and energy directly after the liberation procedure could rather be attributed to Angiotension effect as well. Correcting the blood flow does not result in the immediate removal of all excess iron and immediate repair of the damage done by multiple sclerosis, but would rather take a couple weeks to change. Altering the blood flow volume can alter or increase the function of the hypothalamus or the part of the brain that is responsible for most neuro-hormone production. This in turn could lead to the increase of ACTH, ADH, neuro-pinephrines and dopamine levels, leading to the feeling of well being. However a large percentage of patients who did have the procedure eventually loose this feeling after a couple of months without restenosing. Certain patients actually report this feeling of new lease of life and increase energy only after a couple of weeks, and this could be interpreted as a direct result of “Liberation treatment”. A direct result of the treatment as well is the fact that balance, gait and strength improves after a couple of weeks in some patients.
Lastly the question: “Is this procedure safe, and are there long term complications?” Balloon angioplasty is relatively safe, and there is little complication to report. If one leads oneself by the USA national figures for angioplasty, there is a 2-6% severe complication rate, some leading to death, but I must add that this figure is based on all angioplasty, and the bulk of these complication are reported in heart and stroke patients. However it seems that the complication is rather less in CCSVI as the procedure is more on the venous side and not the arterial side. The first report is of a stent migrating causing open heart surgery, and the tragic death of Holly. Holly’s death was attributed to a stroke and not as a result of the procedure, but the complication was enough to stop Stanford doing the procedures. But new reports have surfaced on Multiple Sclerosis sites of blood clots developing in a couple of patient, and in a few cases the clots was severe enough to either cause a lung embolism or a stroke. Fortunately it was caught in time and the patients were spared from suffering a severe complication. Most of these cloths were reported were the patients had stents implanted. A further complication that has also arisen is the occlusion of the stent and in about three cases open neck surgery was required to remove the stent and the cloth. In other cases the stent were successfully opened by means of re-angioplasty. But this is serious enough to warrant further investigation in the use of stents etc. A further complication is the rate of restenosis where stents are not used, and continual ballooning may eventually lead to further complications.
With all the above being said, there is a definite need to further investigate CCSVI and the procedure to correct this. As Dr Simka stated, CCSVI is not the direct cause of Multiple Sclerosis, but rather CCSVI and other factors. In my mind only the ultimate theory that Multiple Sclerosis is an Auto-immune disease and CCSVI is rather a complication from the disease and not the cause of it. Treating CCSVI may certainly benefit the bulk of RRMS patient, or compliment the current treatment as we know it. In my opinion, we will have to wait for the next round of trials that is currently in the pipeline, before we jump to unnecessary conclusions on this important discovery. Let us all hope that this leads to at least a better understanding of Multiple Sclerosis, or as duped by some the “Mystery Sickness”, and keep the messenger intact as he might still have something important to say.
The Author is a person living with Multiple Sclerosis. For more information visit my website at this address http://www.themultiplesclerosis.com/
Source: http://www.durabe.com/ccsvi-in-multiple-sclerosis-what-do-we-know-so-far.html