Over the past several months, there has been a buzz through out the MS community about an experimental new treatment that can cure people of MS symptoms; CCSVI. That was how I first heard about it; an Italian doctor, Dr. Zamboni, who’s wife was diagnosed with MS, discovered what he thought to be a possible source of her symptoms and performed an operation that ultimately freed her from her suffering. Now, I’m over simplifying things. Obviously more research was done before the doctor’s wife went under the knife, but the theory that was conceived from that one event has sparked an international controversy.
The CCSVI Theory believes that in many, if not most, people who suffer from MS, there is a significant narrowing of the veins in the head and neck regions of the body. The narrowing restricts blood flow from the brain to the heart, preventing the blood from being recirculated through out the body. Instead of leaving the brain, the blood continues to circulate through out the brain. It is thought that the lack of drainage out of the brain causes iron build up with in the veins and can possibly result in the symptoms most commonly associated with Multiple Sclerosis.
Now, once again, I’m over simplifying matters, but that is the CCSVI theory in a nutshell, and it has been cause for hope and skepticism for many people with MS. The current, accepted, theory about MS is that MS is an autoimmune disorder. The body’s immune system, for some yet unknown reason, starts attacking and wearing away at the myelin; the protective coating through out the entire nervous system. Suggesting that the cause of MS isn’t autoimmune but vascular has huge implications because unlike an autoimmune disorder, a vascular problem can more easily be corrected. The proposed procedure for CCSVI is to place a stent or angioplasty into the narrowed veins, much the same way that arteries are opened to promote blood flow away from the heart. The stent or angioplasty would open the vein and allow the blood to drain properly from the brain and continue circulating through out the body.
So why all the controversy?
It is pretty well understood and accepted that any new breakthrough in understanding of a disease, be it cancer, multiple sclerosis, HIV, heart disease, etc, there is typically a long period of research, testing, and trials in order to prove that a theory has merit. Then an equally long if not longer period of research, development, and trials to come up with a treatment or better yet, a cure. This drawn out process was developed to protect patients from being harmed by risky ,and unproven procedures; holding the medical field to the oath; first do no harm.
In the case of CCSVI, there are thousands if not millions of people the world over, afflicted and debilitated by MS, who just do not want to wait to see if the theory and accompanying procedure are the real thing. Hearing that Dr. Zamboni’s wife was ‘liberated’ from her MS symptoms, and rumors of hundreds more who’ve also been ‘liberated’, seem to be proof enough for many. The result, thousands upon thousands of people bombarding their physicians with demands for the treatment, and/or making desperate attempts to obtain the money necessary to fly to a foreign country and have the procedure.
Current, newer, studies show some hopeful optimism in regards to Dr. Zamboni’s work; however, the results from a larger sampling of people are not matching up the the original hype. Despite recent findings, there is a sense of validation that the CCSVI Theory is true and having the procedure will rid MS suffers of their symptoms. However, no one seems to want to really look at what is being said, or the implications to their health and the health hundreds of others who’ve rushed out and had the procedure done without waiting to see if this is the answer everyone has been waiting for. No one wants to hear the calls of hoax and fraud from members of the medical community; who would like nothing more than to stand behind a major medical breakthrough, but find themselves unable to because of moral and ethical reasons.
Unlike some other diseases, such as heart disease or cancer which have many aggressive treatments available, some of which are considered cures, MS has no truly aggressive way to fight. One of the most frustrating things about MS, is the fact that there isn’t much that can be done for the patient outside of treating symptoms and prescribing medication that would hopefully slow the progression. Many people with MS often find no relief from their symptoms and yet are still expected to go about their lives. So, it’s understandable that there is such a powerful need and hope through out the entire MS community that this latest theory and insight into the disease will bring about the end of the suffering of millions.
All I’m asking for is a collective breath and a return to rationality. As much as I dream of a day when I can go back to the way my life had been before the MS, I feel that there needs to be some perspective. In the short time since I’ve been diagnosed, I’ve heard of at least two proposed possible cures for MS. One involving a treatment that cured MS-like symptoms in mice, and CCSVI. Neither one is being declared the definitive cure, and I know that it will be at least a decade before either one could be declared a possible cure.
Before we grab our pitchforks and torches, and prepare to storm the offices of neurologists and physicians across the globe; lets think about things for a minute.
Is finding relief from the misery that is MS, worth putting our lives at risk for an, as of yet, unproven procedure? Is it better to further cripple ourselves just so we can say we did something in the face of hopelessness?
Scientific and medical progress aren’t furthered by people throwing themselves at every possible hope for a cure; in fact it becomes hindered. What will happen if some of the people who rushed out, took out loans, sold their homes, went further into debt, to get the CCSVI procedure only to learn too late that it might have fatal consequences? Would the families of those patients just sit quietly buy and say; “Well, we knew it was an experimental procedure..”? Heck no! Anyone who develops a serious complication or dies as a result of this procedure will then spark a huge multinational lawsuit against every doctor, hospital, and clinic who recommended or performed the operation. Any money that was raised to further research into the CCSVI Theory will be spent on litigation; and all research would come to a grinding halt. Possibly killing an idea that with the proper amount of time, dedication, and research, could have become the answer we were all looking for.
So, at the risk of infuriating others with MS who are counting on CCSVI to make things all better… I am choosing to adopt a wait and see approach and encourage others to do the same. Let there be more research into CCSVI before we hail it as a miracle cure.
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