Saturday, August 28, 2010

Making the Right Choice

As you could probably tell from my before videos, I was none too enthusiastic. Even in my first post video and I had realized all of the improvements, I couldn't accept it well. That was the easy part. Trying to get information to the people who need it in a way they could accept it is more difficult. Now that the initial skepticism has run full course there is the problem of unbalanced supply and demand.

A few people have asked me, " Why when so many of us believe in CCSVI is it so hard to get the treatment?" Before doctors fully realized the scope of this movement, we basically could slide into an opportunity under the radar. Now that opposition is taking root, it has become a matter of who you know, not what you know. Doctors, MS societies and pharmaceutical companies are now recovering from the internet explosion that sent them reeling a few months ago. I am more apprehensive about public exposure than earlier on. However now there is nothing to do but see it through.

We are first and foremost consumers. The doctors we see are providing a service for which they are well paid. That’s perfectly normal and acceptable. When I was young, my parents taught
me to listen to the doctors and do whatever they told me. My experiences have taught me that fear and awe was behind that mentality. All doctor’s are not created equally. The day of the country doctor who took care of everything from pimples, carbuncles and adolescent angst to setting bones and birthing babies is well past. Technology created a critical need for the rise of medical specialties.

Family practice clinics are now triage centers. They care for our everyday complaints and common illnesses with confidence. Anything beyond the obvious requires a referral to a specialist. After all, one doctor no matter how efficient can possibly stay current on the incredible scientific theories and discoveries. This leaves a black hole for the patient when one hand no longer knows what the other is doing. One does not have to search far to see that most physicians can’t agree with each other. Neurologists are polarized by the very existence of CCSVI. Some still deny its existence at all.

The treatment for CCSVI is widely diverse. Each doctor brings his or her own bias and prejudice to the table. Many doctors are under treating for lack of training or expertise. There are disagreements about the catheters, pressure, stents, and many other specifics. As patients, we are woefully unaware of these inconsistencies.

As predicted by the MS societies and neurologists who have been fighting us all the way, the results are mixed. They have themselves to congratulate for much of the failures so far. Had they put as much effort into helping us as they have opposing us, we would all be able to rejoice. Most of us have had wonderful results. Some have had little or no improvement at all.

We shouldn’t be shocked at this development. I am not ignorant concerning the need for safe and practical studies to gain a solid baseline for treatment. Their call for double blind studies equal that of drug studies is ludicrous. After reading a library full of these “studies”, I have come to the personal conclusion that we have literally been tortured with disease modifying drugs. The irony is that we have been bled dry in the process by paying handsomely for the privilege.

The reaction from the PwMS with these assertions is interesting. Many feel as I do. As disabled people with a reasonably long lifespan, we make an unprecedented and endless source of revenue. Some of us see things more personally.

Case in point: A man or woman with Progressive MS has taken __________________fill in the blank with Avonex, Rebif, Copaxone,Tsybari, or any other toxin d jour for several years. If they have a “good” MRI then the doctor tells them how well the drug is working. If they have a “not as good as we hoped for” MRI then they are to be thankful for all of the damage that “probably” did not occur because the drugs are working! This same person has taken a wide variety of medications to counteract the side effects of these wonder drugs. If they relapse they can be treated with IV Solumedral therapy. It works like a charm, for a while. The damage done to their liver or pancreas is just another unfortunate consequence of dealing with MS. The years spent in all this therapy, most of which I didn’t even mention, is done with full faith in the doctors who prescribed them and the pharmaceutical companies that produced them.

Now enters CCSVI. To accept any of the truths about the liberation procedure, our hypothetical patient has to admit they have wasted all their money, hopes, dreams, and time on $30,000 a year worth of treatment that did little but keep them alive, maybe. It isn’t unreasonable for him or her to feel used, stupid and angry. Their answer is to pretend that CCSVI is just another snake oil treatment. After all, we have certainly had our share of those. As a liberated person who spent 15 years in decline, I can tell you that the reversal of symptoms and being well has its own pitfalls and trials.

I am one of those angry people. The only difference is that for once, something about MS made sense to me. I felt just as taken in and lied to as any of us. When I first showed enthusiasm for the liberation procedure, I took it in the chin, and elsewhere, time after time from some of the people like my illustration above. When the tide began to turn in favor of the efficacy of the liberation procedure, those calling it a red herring, lie, hoax, snake oil, and other names I won’t share, are becoming experts who suspected venous insufficiency all along. I wish them well.

One of my biggest concerns is a lack of good post procedure information in a central place. I receive an e-mail or two almost daily from people who are ready to have their procedure and have an appointment, yet have little idea of what to expect. I wish I had the time to finish my own guide for liberation before it is hopelessly outdated.

As a whole, we are very resourceful people. Amazing things are happening with the internet as our main resource. There have been some in the media willing to take our side and stand behind us, but too few. I won’t soon forget the ones who have put us up to ridicule and unbridled criticism. When our “guinea pig” era comes to an end, everyone will remember. I fear that history won’t be kind to those who drew the line too soon.

I respect the manner in which each individual makes decisions for themselves. For me it is best to search the options for myself, make a decision and then pray about it. I make mistakes much less often that way. If I am relieved of some of the anxiety and worry, I feel confident in my course. I hope everyone can weigh their options and decide if they can wait for doctors to gain experience, or know that now is the time. I will never get back the years I lost to MS, but I am thankful for a second chance to be me. I’m no spring chicken, but I’m not an old Geezer yet either. Just ask my Dad!


Anonymous said...

Well written. I am sorry that you have had to face so much criticism, its isnt fair. It would be so much easier to say, "I dont care about anyone else"...but that just isnt so. I believe in CCSVI, and the improvements. I had the procedure Aug 11.

Unknown said...

I am very happy for you. Each new individual I hear about makes it all worthwhile. If I have any part in that, the rest is truly irrelevant.
Thank you for sharing your news. I hope you are improving. I would like to know even if it is anonymous.
Best wishes,

Anonymous said...

I have to say that you're one gutsy lady. Thank you for this blog and all the information that you've given us. You are an inspiration.

My wife is scheduled for CCSVI Liberation in two weeks in a northeastern US hospital. Our biggest concern is that the Interventional Radiologist who is performing the procedure is a strong proponent of the use of stents to "permanently cure" the condition. We are very concerned about the possibility of stent migration. Any thoughts?

Unknown said...

The use of stents is a very personal choice. The chance of restenosis is estimated at 50% by 18 months post procedure.I believe the future re of CCSVI will include periodic angioplasty. That would be the best option in my opinion. The cost is certain to stabilize when the supply meets demand.It will be far less expensive than the use of disease modifying drugs, not to mention the benefits of no medication. At this time, however, the use of stents in the treatment process is very controversial. I chose to have the stents rather than restenosi and not have the financial resources to have repeat procedures. Migration is of course possible,as well as are arterial stents. I felt it was worth the risk. The stents from my first procedure were well in place when I had the second one.Statistically, the risk is low.If the chance of restenosis and its subsequent expense is workable for you, then you may want to go without them.It is a difficult choice. I am happy with my decision, and hope you and your wife will make the best possible one for her.
Take care,