Written by: Cherie C. Binns RN BS MSCN - July 2, 2010
There are a couple of articles on CCSVI in this past issue of Stuart's e-newsletter that really concern me. They are written rather professionally with what appears to be total acceptance of this as a factual cause of MS and the liberation surgery as a cure or drastic improvement measure. This is NOT true from what we know to date.
The videos of before and after that were placed on youtube and have been reviewed by a panel of MS physicians and one believes to know the patient who tends to be good one day and doing poorly the next anyway so they feel this video does not show anything more than a potential "placebo effect".
Another concern is that by merely ballooning the Jugular or azygote veins, you run the risk of almost imminent narrowing again. There is currently not a single stent on the market anywhere in the world that is made for veins instead of arteries and there is a real fear that an arterial stent can dislodge in a vein and create a scenario where a heart attack of stroke occur.
There are several groups working feverishly in the US to study this phenomenon and try to come up with a fix for it to see if it truly does impact the course of MS in some people but we are not there yet.
The posting of these two items is disturbing to me because of the implications in those who have lost hope or literally have not looked for it elsewhere.
Cherie C. Binns RN BS MSCN
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11 comments:
While I appreciate Ms. Binn's views concerning the liberation treatment regarding CCSVI, I have to respond with my own comments. Does Ms. Binn have MS? Is she a caregiver of someone with this disease? I have had this disease since 1996 and am very offended by her remark regarding hope and her implication that those of us that suffer from this malady have not researched treatments. THIS IS HOPE!! My neurologist's have offered no such hope. They strictly adhere to the ABC drugs and Tysabri (which may kill you by the way)I have been on all of these and STILL am getting worse! How dare Ms. Binn insinuate that, we with this disease, are ignorant of the options available to us. Shame on you!
"Ms Binns" does, in fact, have MS. I was diagnosed in 1994 after 19 years of symptoms and hospitalizations. It was only after an episode of ON and loss of left arm use that an MRI was done and diagnosis made.
I have been on most of the FDA approved therapies over the years, confined to a wheelchair, legally blind, needing to catheterize, suffered from osteoporosis and multiple fractures and diabetes from steroid therapy and am now on IV Cytoxan for the past year.
I tell you this so that you will know that I am not "ignorant of the options available to us". In fact, I am an expert in the field and one of about 500 MS Certified RNs world wide. I accept no shame for what I have written because it is stated with every ounce of information available to both lay and medical communities.
I hope this condition is treatable and as a result, MS in some people is relieved. I do not believe it is a cure nor will it help a majority of patients and I believe it to be more dangerous right now than it will be as we perfect the procedure.
Cherie C. Binns RN BS MSCN
I have to somewhat agree with Ms. Binn. CCSVI is unproven and needs further testing, even acccording to Dr. Zamboni - the Dr. who originally tested the theory. Those rushing to insist it is a "cure" should at least listen to the originator - Dr. Zamboni - who has said it needs a lot of further TESTING.
The issue of stents is also serious as one person died and another had to have open heart surgery to remove one which dislodged.
However, I have had the CCSVI procedure done as has my daughter. In spite of what the ultrasound, the venogram showed nothing so it did not help me.
On the other hand, it definitely did help my daughter, although we realize that may be temporary. In no way was it "placebo," for lots of reasons too involved for this kind of response.
However, we had the procedure done KNOWING IT WAS EXPERIMENTAL and that WE WERE GUINEA PIGS.
Anyone who is going to have the procedure should be realistic and understand that it is very experimental and that the risks are not fully known, as with any experimental procedure.
I have been through the ABCR's Novantrone, Tysabri, and zenepax. I would urge anonymous to get a new neurologist if he/she has not mentioned other drugs available incuding Cytoxan, when ABCRs do not work.
There is a lot of value to volunteering to be a guinea pig - it may help you and it will certainly help others with MS, but to rely on a few hundred people who have had the procedure in studies is unwise, especially from people unwilling to try Tysabri and othe drugs where the risk is known.
To them, I would point out that at the two year mark, with Tysabri having been tested on thousands, there was no PML. Why believe that CCSVI is a cure with no risk after a year and a a very small number of people?
PML showed up after 2 years. Don't be so sure that the CCSVI procdure will be totally safe, effective, and with no bad side effects.
I hope people will not rush off to foreign countries to have the procedure unless there is a way to receive follow-up and unless there is a way to check on the stats of those who have had it in those facilities before. I have seen no scientific reliable report of the outcomes from those countries - have you??????
I have concerns of the use of blood thinners. And of course that this is all so new. As I have mentioned to many, I will wait a couple to three years as for me, this is all experimental at this time....
I am also diagnosed with MS and am currently on Tysabri after failing on Avonex. Even on the Tysabri, I continue to have active lesions and suffer from daily fatigue and pain. My options are limited. Right now I have the Shingles from stress and immune supression and I look for any hope out there to help with my symptoms and progression, as well as side effects.
I am also a nurse like Cherie and aware that CCSVI is investigational at this point. Since I have the medical backgroud to understand the potential complications of stents, I understand this is not a choice worth my energy getting excited about just yet. I see new and existing stents get blocked and disloged all the time and they are stents that are approved for arterial use.
Maybe in the future it will lead to a solution, but for now it is too early for me to get my hopes up.
My thanks to Aimee and others who share their comments
I think it's also important to point out that this theory isn't even 12 months old, and I think what is disconcerting to me are the people holding on to it like it's the gospel, and we don't have the research behind it.
Anonymous mentioned that Tysabri can kill you. Just wait until someone dies from going to another country to have this illegal procedure done. It's extremely scary that people are putting their faith in doctors they don't know because they think the liberation treatment is going to help them. I honestly don't think Cherie Binns said anything offensive. She's using common sense.
dear Cherie, we have something in common! i was diagnosed in the same year as you. You could say I've been very 'lucky' with my MS and have only started to use a stick about 18 months ago. the reason i'm excited about CCSVI (enough to be getting scanned in my own country next month) is because it looks at MS in a totally different way to the immune modulating CRABs.
I live in the UK where healthcare works a little differently but I have been 'eligible' for the crabs for over five years. All this time i've thought LONG and hard and chosen not to go on them as they didn't seem to work very well. With a little better than placebo benefit the risk:reward ratio has remained unfavourable to me for my set of symptoms. CCSVI sounds hopeful to me as it sees MS as a ‘mechanical’ problem that’s worth attempting to 'fix'.
Along with this vascular theory a heart healthy diet and as much exercise as you’re able is highly recommended for narrowed veins. For me, I prefer to think that I have at least a little control over where my body ends up and what shape it’s in when it gets there.
We could all get hit by a bus tomorrow but if we look both ways we can reduce the chances of that happening.
A bit like someone who’s had a heart attack can move more and watch what they eat to try and avoid bringing about another.
I can’t speak for anyone else but this theory, by looking away from not very good treatments has brought a feeling of control/personal responsibility back into play.
BTW: I’m not anti-pharma but when somebody’s done a not very good job it’s time to start looking elsewhere.
CCSVI is being proved everyday around the world. There are many naysayers who have not done their own research and believe those who have something to lose if we are healed. It's all about money! Medicine is now business, not always in the people's best interest. CCSVI makes sense!
I completely agree with Ms. Binn.
As I continue to monitor this treatment option, it appears that CCSVI helps in some cases, but not all. The effect of CCSVI liberation treatment does not last long in some cases (restenosis occurs in a matter of weeks). Some MS patients do not even have CCSVI. So I don't believe this is the cause of MS, and definitely not a cure. It seems to give temporary relief in some cases. Notice how many times I have typed "some."
People who have had success with alternative treatments such as bee sting therapy and Low Dose Naltrexone become evangelical and insist that this is the only way to go. I've tried a number of such treatments with no success so tend to be skeptical.
Each of us with MS reacts differently to everything. Each of us needs to cling to hope but we also need to be realistic and understand that not everyone will have success from this treatment.
To pin all hope on one treatment is risky.
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