Below, is MY opinion and after the initial message was sent to just a few (via email), you can then see two responses I received.
I kept the first paragraph just to show exactly how it was written and nothing has been changed.
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Dear MS Friends and Friends of MS,
This message being sent to those who email addresses appeared on a message sent to me (and found below my message) and to others whose addresses have been blind copied...
Listen, stop and think...
Before succumbing to global attention of CCSVI think beyond the procedure.
Sure you may run off to places such as India or Poland - where the procedure is being performed (dollar-wise) for far less then in other places.
But where afterwards would you then be seen for follow-up care. Where would you go if there was a problem. IS your primary or you local neurologist going to mend something that 'another' did? If the unblocked vein begins to fall or then block again, will you be able to afford another trip back to have the procedure again?
Are you knowing that it appears that high percentages of people even without MS, are known to also have venous blockages somewhere in their body?
And what if the MS patient has more than one blockage?
What if it's not just in the neck.
How do those other blockages or forms of stenosis going to better the patients health or will the patient need to have all areas of stenosis found in the body, angioplastied?
I have heard from several persons with MS or family members of those with MS, who had the procedure earlier this year and are now needing it again.
Their simple answer is that the doctors doing the procedure missed something the first time, or that they were not as skilled as they are now to do the ballooning.
But seriously, who says that these doctors "are" skilled enough to again do the procedure. Who gave them a better rating for doing a CCSVI procedure?
Yes, I truly understand that for those that have no other alternative(s), CCSVI seems like the cure. But is it?
So did Stem Cell treatment a few years ago, yet this was huge news one year and has since fizzled drastically while research goes-on with hopes for soon being able to say, It really works. And years before this, there were those they cried-out that certain juices worked as a cure and hundreds of thousands of dollars went to those that started that thought. And years before this there was bee-sting therapy and other things.
DAILY, people send CCSVI articles to me that they want posted to my blog, which then feeds to facebook and twitter, for countless thousands to see.
I review each, do some research and find usually that the article is from 2009, some even from late 2008. I then inform the persons sending the information that they should know, that what they sent was old news and that nothing new has surfaced in quite some time...
I am writing this because NOTHING new has come-about of CCSVI in several months.
Nothing new with research, not even from the CCSVI community, other than to say that hundreds are now being unblocked each month and that everybody should have the procedure.
How do we know that real people, with real ms are writing up the benefits that they have received from the procedure or is it being written, by the people that will harvest financial wealth from lining up hundreds at various clinics to do the ballooning procedure?
Does this unblockage cure MS, totally reverse damage already done to the Myelin?
Where are those updated news reports? Where are the numbers of MS patients that have had the procedure from each clinic with updated reports on how they are feeling today.
Sure - I used to see lots of Facebook messages from people going to Poland or India, but I have not seen messages from these people since they first returned feeling smug and like life has re-began for them. What is the truth behind this? Yes, these are questions from me, a skeptic to most things thrown at me.
I am concerned for the thousands whose expectations might be greater than the benefit, and that their bank accounts might be suffering.
Does it pay for the patient to get some relief from a procedure that obviously requires greater amounts of research?
Yes, I too have MS, am using Tysabri, getting ready to have my 8th infusion tomorrow (July 26th) - and will stick with this for now as it too has given me back QOL ( Quality of Life) and is already medically proven to help many more than what I have thus far seen of CCSVI unblocking, in the long run.
Sorry if I vented too much, but just think that more, a lot more, needs to be known before people have this procedure and I am hoping that the MS Society's from around the world, would help to keep people informed and up to date.
Best Regards,
Stuart Schlossman
(an MS Patient)
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Replies received via email:
Stuart
Thank you for being so outspoken. I have been afraid to do the same as you, afraid to speak my mind.
I did not want those that are in need of something,desperate for a cure, trying almost anything, to be spiteful of my remarks. I will wait a few years until more is known of this CCSVI. Is it real or is it nonsense?
I am PPMS and but I will wait. I will retain what little money I have and feel to use it more wisely than to give it to people or doctors, who I will not see after the angioplasty. Yes, Who would I see, after returning Stateside, if there was a problem.
Melissa
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Hi Stuart,
You are right.
It is time for people to stop being hysterical. Much research needs to be done before this procedure can be routinely recommended.
The MS society is contributing to this research.
There are the fanatics who accuse mainstream MS caregivers (physicians, suppport ....including you, including NMSS, pharmas) of not having their best interest at heart. How sad and distorted these people are.
How many MS physicians have dedicated their lives to helping people with MS.
So let us be open-minded and wait and see.
However, for those who have money to spend, they are entitled to their own decisions and risk-taking. But continue to respect the evidence-seekers.
Wishing you health and safety
DrS
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IF you have a comment, positive or negative to what I wrote, leave your comment here -- here on this blog page please, so that those that do not have facebook, can also see what is being written.
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23 comments:
I'm tired of people trying to sell it to me as the cure to my problems. I had someone telling me how great it was. That's like telling me to take a pill that's only been in trial for nine months because it should make me feel better.
As you said, not everyone has this issue. Neurologists who are interested in this, think that it MAY become a way to treat people, but it's not the cure.
And lastly, stop sending me LINKS to FACEBOOK MESSAGE boards to hear people's stories. Facebook is NOT a credible source of information. I don't know what reality people are living in, but I'm living in one that just doesn't jump off a cliff without knowing that there's going to be something at the bottom that will cushion my fall.
I have my date for scanning - Sept 7 - and am more than happy to be a guinea pig because the medical profession has NEVER offered me anything.
I am in total agreeance with you Stu.
I am 27 years old. One year before my MS diagnosis, I was diagnosed with another condition called Idiopathic intracranial hypertention aka pseudo tumor cerebri. This began the first nightmare of my medical journey.
After nearly losing my vision and seeing a multitude of Dr.s I realized I had to be my OWN advocate. They informed me I was suffering from Migraine headaches. The few the proud and the know it alls are who told me this. I knew different.
IIH is a condition where the CSF does not flow properly, or does not become absorbed well in to the blood brain barrier, causing massive pressure in the skull and back.
I was diagnosed with MS a little over one year later. They tell me the 2 conditions are non-related, but again, i believe different.
When I first heard about CCSVI, it excited me, just as any breakthrough. Especially adressing the part with the spinal fluid absorbtion.
I do believe that there has to be trials done in order to find out if this can be proven. I do not believe MS has one sole cause. I believe thee are a multitude of reasons MS occurs, thus explaining the different forms, just as would cancer.
I also believe that someone who is older then myself would more then likely have some blockage of the veins just due to the aging process. Its a natural occurance, especially if you have had a family with a history of heart disease. As many of you know, having a angioplasty when you have clogged arteries doesn't always last forever. I would like to see a baseline of these veins from people who are first diagnosed with MS in their twenties and then the subjects 5 years later, etc.
I also know that having abnormal vessels in the brain is a much riskier procedure to preform an angioplasty on and would require a neurosurgeon. Unfortunatley, there are so few neurosurgeons available due to the cost of malpractice insurance. My real concern is here.
The idea of neurosurgery for a stent to be placed does not rest easy with me, yet.
There is so much more we need to know. We have these guidelines set for our safety.
Having a spinal tap done at one hospital and going to another for follow up care was extremely difficult. They did not want to touch another hospitals "mistake"
the answer to the problem was a simple blood patch, but it took 4 days for them to decide, and this was just down the street.
The liability for out of the country surgeons vs. united states surgeons is much greater.
even a sucessful surgery doesnt factor in other variables such as idea of possible infection. In the united states alone 90 thousand people died of HAI's ( hospital aquired infections ) each year. This is wih the guidelines we have set!
There are so many variables, and I can go on a tagent forever, but I agree with you. I am hopeful, as always, but would like to see more.
I think starting off with MRV's and Venography is an excellent way to start the trials and examine a possible connection.
Thank you for posting this, and speaking from experience and seeing many many doctors in the last few years, you must be your own advocate.
I agree with all the above comments. I just cant get the loss of my dad out of my mine. He had a stroke with 80% and 60% blockages in his neck they wouldnt operate. After long term care for 2 years many trips to the hospital they decided to amputate both his legs 6 weeks before he died to get more blood and oxygen to the brain and heart. They fix blocked arteries and veins as routine surgery in canada. Im scared with my diagnosis of MS I dont want the life my dad had the past 15 years. My heart just says with CCSVI dad woulded have suffered this way
I don't want to wait- I don't want to take an ms drug- proven? how?? Brain infections does not sound like a cure for me....
I had a narrowing angioplastied- it is not unproven- blood flow is essential to life...
Almost 3 weeks later- and my life is given back to me. I love when my husband looks at me and smiles- and says. 'I have my wife back'....
Everything with ms is experimental- they don't even know what ms is.
Everyone needs to decide for themselves what to do. Don't just blindly trust the drug companies.
CCSVI is not a neurological issue, it is cardiovascular. Veins are thinner than arteries, that is why stents can be dangerous. Baloons dont always keep the vein open, so why not work on an another alternative to open veins. If this is not a cure for MS it will still make a person feel better. Veins were not meant to be blocked. I do not have MS but if I have stenosis, my doctor will have to treat me. So does it matter if a person has MS or does not have MS? The patient still needs the veins open. Stuart, dont be such a downer. I would rather have the vein procedure when perfected, I have 2 artery stents for my heart, it was nothing, I was out of the hospital the same day. Also, there is stem cell reseach being done presently for myelin on the spine, as per NATIONAL MS. My son has MS, this is why I keep up on issues and am also an advocate for MS. Never loose Hope, by the way my son had the infusion treatment and was so weak he could hardly speak. Some of these drugs have dangerous side effects. Lets hope for an alternative treatment.
I would like to sign the above comment. Georgianna Blanco. I had trouble getting it to post.
I have been studying CCSVi since end 2009 (on my blog) and I must say, if I had money, I would get angioplastied right now!
Hi Stuart,
I don't have MS but as you know, I write about it and write mostly about CCSVI and how it's changed people's lives. I'm not making money off the stuff I write; I write because I've seen the difference that angioplasty has made for people and it makes me ANGRY that it is such a political, economical and medical battle because it MAKES PEOPLE BETTER. I've seen them before angio and then seen them after and very little compares to the joy they have of being able to do things again - like sign their name. Or sleep through the night. Or be a part of their family once again. And those are the secondary progressives. For the RRMS, their improvements are often amazing. No more drop foot. Energy to spare. Being able to smell. Wanting to have sex again.
Yes, these people are guinea pigs because no one knows how long it will last. It's true, the doctors are getting better at this - they were really fumbling with it at the beginning even in testing because they had a hard time with the protocol, but as they notch up more patients on their belts and look at these veins and figure out where they're not working and get them working again they are getting better. And better results.
I ask the people who have gone away about it and every single one of them would do it again. Many of them are now doing what they can to make sure they are as healthy as they can possibly be going forward - going for physio to get the muscles in their legs strong again. Being dedicated to their diet. Hugging their children and their husbands.
And sorry, Stuart, but the MS community has been guinea pigs for the pharmaceutical industry and drugs that, for example, cause brain cancer, but are drugs that get fast-tracked and covered by insurance schemes and have become widely distributed. Angioplasty for CCSVI is a procedure that lets your blood flow properly back to your heart once again. And no one says it is a cure. But it could be the most important key in unlocking this disease that anyone has ever come across.
THANK YOU Jon, Lori,Georgianna, Adrienne, and Colleen.
Since CCSVI is a vascular issue and an Interventional Radiologist treats the collapsed vein, why is it such a negative thing for nay sayers? I want proper blood flow and proper blood circulation. Think about all your MS symptoms. They all have blood flow/circulation involved. Why do we have MS? Because we are being denied angioplasty. No CCSVI, No MS, No Stenosis, No Sclerosis. Pretty well says it all. Hey, DMDs are obviously good for you so keep on taking them. I do not care if you do not want to fight for your life. You have the choice and so do I. Just do not stand in my way with your nay saying attitudes.
Stu, you've raised several questions that I myself have pondered regarding CCSVI and balloon angioplasty, especially if it's done a foreign country. How can our doctors back home give us the proper care if they don't know what the doctors over there did to us? What are our legal rights if we become injured by a doctor or surgeon overseas? I too have seen posts by those who have had the surgery and then become quiet. I'm wondering if anyone out is keeping track on their progress, and if not, then how is this going to help anyone else with MS? Speaking strictly for myself, I'm waiting for the scientific evidence to come in first before even contemplating getting my veins screened and interfered with. And no, Facebook and YouTube testimonials do not constitute scientific evidence. I know that the medical community has been preforming angioplasty on ARTERIES since the '70's but angioplasty and stents in VEINS are relatively new surgical interventions even in stroke patients (who are treated by neurologists and neurosurgeons).
Finally, a plea to all of those who are on the pro-CCSVI side: Please STOP with the Neurologists-Big Pharma-NMSS conspiracy theories! Please STOP making unsubstantiated claims about our treatments, like they're going to KILL us or they DON'T work at all! And please STOP from attacking us if we don't agree with your opinion and sell everything we have to get "liberated"! You're not helping your cause.
Touché - to Maria
The word "touché" is also often used in popular culture and general conversation — for example, in an argument or debate — to commend someone on a clever response to an argument.[3]
To Collen and other proponents of CCSVI
Quite true that study is needed. Meanwhile though, people who are undergoing CCSVI surgery should not mock big pharma.
If not for big pharma, hundreds of thousands of others might have become SPMS or PPMS. But thanks to the medications that are available, the disease for many has been kept in check.
For the others, I am sorry that the meds were either not available to you in earlier years and I am sorry for those for whom the meds took no control over the disease.
I really do hope that there is long lasting benefit to CCSVI surgery. Time will tell and like Cathleen wrote, there must be those who are used for experimentation...
Keep the comments coming please.. Pro, con and middle of the road
Thank you so much. You have stated your views PERFECTLY on this issue. I am so sick and tired of people telling me I need to "get CCSVI" or reading people who say that if you have MS then you "definitely were born with CCSVI". These people are scaring those new to finding out they have MS into spending a TON of money on something that could be very dangerous (or an all out scam depending on who they go to since this is not currently regulated).
i have been thinking about this procedure for many weeks. i have made dr appt. and at the last min. chickened out. reason: the same thing you said. "who will take care of us when we need after care. no dr. wants deall with people out of the box. ccsvi is out of the box. we can have ten kinked veins. what if we get a infection, what are they going to give you, or don't they know. my guess is there going to guess. my dr may wash his hands of me! please if you do it make sure the dr is well tought in this particular procedure. GOOD LUCK>and i hope and wish you all well!
For the many who did not do as I had asked, that comments be left on the blog, below see the list of comments left on facebook: (broken into a few batches)
Jules Griffiths Thanks for sharing this - it has given me a little more insight, which can never be a harmful thing x
Michele 'Dolly' Barton ッ Ty x
Jon Salisbury Caution is no bad thing and a reality check of the possible benefits is advised BUT when you have been told by a neurologist that "medical opinion these days is that the drugs DON'T work" and he can offer you NOTHING ELSE, who can blame us for being enthusiastic? I will be tested and treated if blocked because I have seen people who have shown improvements after treatment and he who dares sometimes wins ...
Steffi Werthmann It's great that you share this, cause the euphoria about CCVSI is so big, but no one seems to have the courage to talk about negative effects or problems about the after-care. Thank you!
Adrienne Rieckert I am studying the subject since end 2009 and all I can say: if I had the money, I would get angioplastied right now!
Joe Willey I am still confused about this topic and wonder is it a wonder cure? Will the anglio's staay and work forever or do they need to be replaced at certian interval's. I am loving hope but need to hear from more people I really know in person to evaluate the benefits.
Jon Salisbury It is not a wonder cure but can provide benefits and some people do re-stenose.
Stuart Schlossman AMAZING NO -- I knew this would get a reaction from several, but did hope that those who respond, do leave their comments as asked. on my blog so that those who do not want or use facebook, can also see the reactions and comments being left...See More
Erin Teso I posted this on your blog, as well.
I'd also like to point out, that I have had no new lesions in over two years of being on the DMDs, and my two largest have shrunk.
I'm tired of people trying to sell it to me as the cure to my problems. I...See More
Zhenya Stolyar 1. poland, india, bulgaria and such are last resorts for people who cannot find a doctor locally.
2. followup is EXTREMELY important
3. Other than renarrowing the procedure does not need to be repeated, and follow up is then very important t...See More
Forrest Wade I agree with Erin. I have had no new lesions, no active lesions and a reduction in size of lesions. The drug that I am on is working.
As Chuck D said..."Don't Believe The Hype". Besides going to a 4th World Country for an operation....t...See More
Stuart Schlossman OKAY for all who agree with Zhenya - If this is so correct, why then is it so difficult to find doctors, here in the USA and in Canada, the UK and most other countries, willing to do the procedure? Why are doctors who have done it, here in ...See More
Zhenya Stolyar Your question of why is easy to answer. Why are doctors shut down? Well in the case of my doctor, it was not the hospiral that shut him down, in fact everyone at hospital knew about it, including CEO. The corporate office in TX shut him do...See More
More than 50 comments were left on my facebook page concerning this opinionated story of mine.
To review those comments you will need to find where it's posted on my FB page a there are just too many to re-post to the blog.
The bottom line is that there are many who cheered on what I wrote and commented on similarities while at the same time there were comments left informing people where to get more information on CCSVI (from reliable ) sources.
I will create a post of these sources separately.
My thanks to all who left comments here or on facebook.
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Stuart,
I just read your article on Facebook commenting on the latest rage in MS treatment.
I enjoyed your thoughts and really appreciated your objective approach.
I, too, have been suckered in by some of these fantastic cures for MS but after seventeen years of grasping at straws I've finally learned.
Stuart, keep up the good work. I, for one, really appreciate what you do.
Frank Bush
Thanks for your article - it is true, we are only at the beginning and this may not hold up. But as someone with PPMS with few options, it's the best one. This doesn't mean I have complete faith, but I do have hope. Nothing else has given me that since diagnosis.
I feel that if you have few alternatives, we should not be blocked from this procedure - that is criminal.
So to summarize - open debate and questioning, good... barring the most vulnerable from this "chance" procedure, bad
OMG, talk about "selective comment posting"... We ALL know that there are WAY MORE people (MS'rs and not) that are pro-CCSVI than what you are showing... Angioplasty is very safe (safer than ANY dmd's) and there are no long-term side effects, period! It's really hard to not agree with all of the scam theories, money stealing, corruption when the other party (MSS, Neuros, etc) DO NOT have any sort of comments to the statements.
OMG TREVOR,,,
It is not that I have deleted anything. QUITE the contrary. I have asked over and over for anybody to comment. On Facebook many pro CCSVI-ers responded. But when I ask them to also post to the blog, they don't.
What am I supposed to do to get them to place their comments here too??????
And by the way, did you see the CCSVI story I posted today on this blog. You might be surprised that I still post favorable CCSVI articles as YES , I want to see that this works, I just do not know first hand and instead have been hearing from many snake-oil, scam artists....
Rally the Proponents to leave their replies on this blog site for this posting!!!!!!!
Thank you
CCSVI makes so much sense to me by the way I feel. There is lots of positive news about CCSVI. If the blood in your brain and spinal cord is not returning to your heart to get oxygen, your body will suffer. Plain and simple. 97% of Zamboni's patients had clogged veins. THAT is a huge number. It is extremely important to do your homework before having the procedure and staying close to home is a good idea. I am looking forward to continuing my CCSVI adventure, and can't understand how MSer's aren't thrilled to have symptom management WITHOUT DRUGS! Are you kidding me...Tysabri?? No deaths from CCSVI. Check out this great new resource: http://www.ccsvi.org/
You know I was skeptical about this CCSVI As a former Investigator I checked and rechecked,Dr.Paulo Zambonie who created this, did so because He had a loveone inflected with MS it is true it dose not work for every one but I am willing to try.more then a couply of countries are doining it now.remember how much drug companies will lose if a cure is found.
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