Wednesday, November 17, 2010

We can't throw caution to the wind, but full speed ahead!

There are a few things that I hear and read very little about concerning the Liberation Procedure. Though the original name gave it a somewhat theatrical air, I find it more appropriate as my life improves. There are common sense steps to take for any medical treatment or procedure. There were no “Guides to Liberation” when I first began to investigate what I thought might be another puff of smoke in a long line of broken promises I came to expect after 15 years of Multiple Sclerosis.
Dr. Zamboni and other front line pioneers seem to have back peddled a bit. I am beginning to understand the critical need for trials, but abhor the idea of double blind placebo studies that are not drug related. Just as we have been exposed to more than our share of unscrupulous neurologists and corporate types who know nothing about MS from a medical standpoint, there are vascular surgeons and interventional radiologists whose bottom line is financially based. I have had the opportunity to watch the procedure, and testing on several individuals. All of those had good results and life enhancing improvements. Before long we began to hear of less than optimal results and the inevitable disappointment which followed. In perfect world we would be able to go to any large city and have this done as a matter of course. That will be the future for MS, I have no doubt.
One consideration is regular follow up care. We spent years getting MRI’s for what purpose, I still have problems understanding. If we are taking blood thinners, we need to have our labs checked on a regular basis. We can’t have other medical issues addressed when we go to the doctor without “mentioning” that we have had a life changing procedure. For those whose visible symptoms were only minor, it may not seem as important, yet it is. I have had a couple of interesting visits with specialists for other issues, such as stomach surgery, because my records indicate problems that are no longer considerations. If there is a medical emergency, we may not be able to explain our medical history. I have had a difficult time getting through new patient forms because I am not sure what is relevant and what does not need close attention.
Immediately following the procedure, most of us are simply sent home after as little as one hour. That isn’t prudent for any procedure that can result in the changes we may experience within 24 to 72 hours. I was so excited I could walk that I pushed myself to see how much I could do. That was unwise as it caused me to overdo it and I damaged my left ankle. It takes time for our bodies to deal with the trauma of the procedure. It is not particularly invasive but can result in the body’s ability to react and move in ways that may have been impossible for long periods of time. Unused leg muscles need time and careful therapy to avoid damage that may be difficult to resolve later. My heart was not ready for the energy I suddenly had and I started to experience palpitations and chest pains that were unrelated to the MS Hug. My first procedure was in June, the beginning of the “cooling vest” season for me. Heat intolerance was a severe symptom for me and many other PwMS. I was disappointed that it did not disappear, but instead escalated. After the second procedure was done, it settled done considerably. Finally my doctor and I decided that exertion was the main reason I wasn’t getting any relief. Those of us with moderate to severe disability accumulated over many years will need to consider the shock that rapid improvements might adversely affect us.
Some who do not get immediate results may find that time is the answer. There are many reasons why a number of people get incredible improvements while others get none. I have addressed that earlier. We should be able to insist on an overnight stay at the clinic or hospital. I know! I can hear the moans and groans already. There is added expense and many considerations to do this. From a medical stand point, I think it is a sound one. My team agrees with that whole heartedly. Not only is it safer for the patient, but the doctors would be able to learn much about what takes place within those all important 24 hours. While there are many questions we don’t have the answers for yet, there is some information we need to be given before we go home. Those who have traveled a long distance in particular need to ask specific questions about what post op issues could occur. I have been reading about some people who are taking major health risks immediately after their treatment rather than resting and getting familiar with their “new” body. Improvements vary greatly from patient to patient. There are some problems which can occur that might be dismissed because the individual thinks it’s a normal reaction. Some doctors are providing complete and comprehensive care with regular follow up appointments and somewhere to call if they have concerns. I don’t think I’m far off the mark when I say that there are not many who stay that involved. The doctor who performs the procedure may have no idea what effects the procedure may have on the many systems in our body. I discussed this with my IR and my GP after my first procedure. Together we came up with a list of things that would be comforting and informative for post procedure care.
We also need to consider the state of our general health long before we set a date with our new doctor. Developing a good diet, sleeping habits, etc. will have an effect on how we react to a plumbing system that suddenly works. Many of us have other health issues other than CCSVI or MS. I was umprepared for the difference in my diabetes, for instance. As symptoms subside, medications will change. Your PCP will want to have some central control on your medications. In my case, I no longer needed Baclofen, Effexor and some of the other drugs used to control MS symptoms. Bowel and urinary changes will most likely occur. There are many side effects that can happen when starting or ending a medication. I was on many different medications and had to learn what was safe to stop, which I needed to be weaned from and some that temporarily had to be replaced with others. Any person who is taking three prescription medications can have interaction issues. We already know that some of the alternative supplements that are considered safe can be deadly when they are combined with blood thinners, and other common medicines for PwMS and post procedure needs. Educate yourself about that special tea you may be drinking or the megadoses of vitamins and or minerals. I can’t possibly list all the contraindications here, but the information is easy to obtain.
Our overall health care is our own responsibility. Though that has always been true, it is essential when we are considering a treatment still fighting for validation. All of these concerns will be routinely dealt with at some future date. There is a great deal we still do not know. That is why we are being cautioned by earnest physicians. On the other hand, people like me don’t have two to three years to wait, let alone the projected five to ten that is likely to become a reality. If you don’t feel comfortable having the procedure done while it is still so new and unexplored by so many, then don’t. Maybe you will be fine waiting and not have to suffer some of the setbacks we are experiencing now. Keep in mind, however that the venous connection to MS and many other conditions most likely has been kept under wraps for a very long time. We have come a long way with only a handful of doctors and the internet to aid us. Making the procedure available is priority number one right now. Someday, it’s my hope that the deliberate cover up will be exposed with some names and details. In the meantime, we are no more guinea pigs then we ever were. The entire MS community fell for faulted theories about Multiple Sclerosis, solely to satisfy the global pharmaceutical companies who know no borders. It could be argued that every person involved in the research and development of expensive pharmaceuticals had no part in the lies and greed exposed to us now. Yet there are many who choose to keep the status quo regardless of the lives lost and damaged. That is unacceptable. There also has been no apparent change in their activities though there is now some awareness.
Of utmost importance is getting better, safely. In order to accomplish this, the standoff has to end.
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