CCSVI concerns

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CCSVI concerns

Postby justjazz » Sun Mar 07, 2010 10:58 pm

I've had M.S. for 24 years, off work for 14. There is nothing I'd like better than a cure for M.S. However, I'm very reluctant to fully embrace this procedure for a lot of reasons. But the main one concerns trials. I think we need to have some patience for the research to come to fruition. The death following CCSVI procedure in Stanford definitely caused me to take a breath, and refocus my attention on waiting for more conclusive results. Sorry if this rubs people the wrong way, but the risks to me outweigh the minimal benefit that I've read about. Your milage may vary.
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Postby costumenastional » Sun Mar 07, 2010 11:43 pm

You should know by now, even better than i do, that many many more deaths have already happened from drugs or the disease itself friend. Anyhow, one of the two incidents was due to stent usage and the other one due to the drugs given to thin the blood after intervention. And this is what caused dr Dake to stop treating patients UNFORTUNATELY.
With baloon usage it is highly unlikely for one to die, and if i can borrow the "risk - benefit" factor from the pharmas i d say that ccsvi intervention is way more safe than the current methods used. Plus, to wait means waiting for something that we dont know if will ever happen.
Having said that, i respect your opinion as i suspect everyone in here will.
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Postby justjazz » Mon Mar 08, 2010 12:10 am

Not sure what drugs you are talking about, but I haven't heard of any deaths caused by the ABC treatment drugs. I can only comment that both copaxone and betaseron have been extremely effective for me. And I just want to reserve judgement on the procedure until I know its track record for success.
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Postby Johnson » Mon Mar 08, 2010 12:16 am

Welcome to TiMS, justjazz. I had been wondering when you might join just to share your reservations.

It is to be admired that you have the patience to wait until all the wrinkles are worked out. That might be somewhere between two to ten years. I've only had MS/CCSVI for 17 years, but I am willing to throw caution to the wind. I've just never quite been able to accept that I will continue to disintegrate. I'm kind of reckless that way.

If it is "the death at Stanford", whose name was Holly, that is so often brought out as a caution not to get tested, let alone treated, that is your biggest worry, I strongly urge you to do a bit of research on this site. You might start here. It is some 64 pages long, but you have lots of time. You will find numerous accounts of the sad passing away of Holly - from people who actually knew and loved her. You will find that it was not caused by the procedure. Research the truth, here. The 30-second disinformation soundbites on MSM might keep you locked away from liberation for another ten years.

There has not been one reported death attributed to CCSVI treatment, conversely, there are overwhelmingly positive reports from those who have been treated. Of course, your milagro may vary. Asi es... There are many accounts of adverse effects - up to and including death - from the drugs for MS. I've been kind of shy of them, myself. I'm admittedly pretty nervous about flying to Poland for treatment. There are still quite a few air accidents. Man, that would be a drag. What if I got liberated, and my plane crashed...

This is a great place to come and read the real stories of real people who have MS/CCSVI, people who have been treated since last spring, and people who have a lot of hope. If you need hope, read on. If you want your doubts to be somewhat allayed, read the Tracking Project Sticky. There are 49 reports so far. There must be a few hundred treated by now, and zero deaths reported. Take heart here, justjazz.

edit -
Not sure what drugs you are talking about, but I haven't heard of any deaths caused by the ABC treatment drugs.

Tysabri?
/edit
Last edited by Johnson on Mon Mar 08, 2010 12:22 am, edited 1 time in total.
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Postby justjazz » Mon Mar 08, 2010 12:22 am

Thanks Johnson for your welcome. Curious though, if the Stanford death had nothing to do with the procedure why would Dr. Dake quit doing them? Anyway, I will read more. I just like to have a few years of solid research to go by is all.
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Postby costumenastional » Mon Mar 08, 2010 12:29 am

Like i said, your opinion is well respected.

Crabs do not kill. But they dont work either for most of us. I am very happy they did the trick for you though. However, i am not sure you are doing well because of them. A number of doctors have told me that after a few years (4 tops) their effect is just placebo for many patients who develop antibodies against their action. This is the main reason we have to go through ALL of them.

There are some drugs way more effective.
Campath has killed. And before you ask me how or when i can tell you that months or even years after campath therapy people have developed a series of other autoimmune diseases sometimes lethal. Good pastor's disease for instance or leuchaimia.
Tysabri kills, no point to analyze here.
Mitoxandone has killed by heart toxicity. It took them a number of years to calculate the maximum life dosage, which is quite small i should add.
As for other, "heavier" immuno suppresants...

All in all, the more effective (dicreasing relapse rate ONLY and not neurodegeneration) drugs, are to say the least, very dangerous given the fact we have to be for all our lives on them. Dont worry, i ve been reading a LOT...

I have had a huge dosage of campath myself. It did stop relapses. But i feel like shit anyway ;) And having changed my body's chemistry for ever in the process is something i really hate.

Please, wait as long as you want since you are more comfortable with that. But remember that CCSVI is a TRUE hope for whom it may apply and time is critical for most of us.

Take care.
Last edited by costumenastional on Mon Mar 08, 2010 12:51 am, edited 1 time in total.
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Postby Johnson » Mon Mar 08, 2010 12:39 am

justjazz wrote:Thanks Johnson for your welcome. Curious though, if the Stanford death had nothing to do with the procedure why would Dr. Dake quit doing them? Anyway, I will read more. I just like to have a few years of solid research to go by is all.


You would have to ask Dr. Dake that.

Reportedly, the coroner ruled that it was not a result of the treatment. The blood thinners may well have contributed to the death, but what is to be learned by that, is not to take blood thinners if you have a congenital susceptibility to aneurysm. Imagine that I have a venous angioma that is quite large (I do). My doctor prescribes me blood thinners because my blood pressure is a bit high(it's not). I feel great, and fly to Australia for a holiday. Unbeknownst to me, that angioma has started to seep, and 11 hours into the flight, I fall asleep. Arriving in Sydney, I can't be awakened. My blood pressure is now very low. My breathing is shallow, and my heart beat is thready. ICP! I am rushed to emergency surgery, but they can not stop the bleed. The media reports that I died from taking blood thinners. Millions go off their medication because there has been an incident People start having strokes, and millions become disabled...

I wouldn't take the blood thinners either.
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Postby justjazz » Mon Mar 08, 2010 12:50 am

costumenastional wrote:I am very happy they did the trick for you though. However, i am not sure you are doing well because of them.

Well, I trust my Neuro completely. He is involved in research, both at the M.S. clinic in Calgary, Alberta and the University of Calgary. I think my neurologist (and me) knows better than you as to what has been successful over the years. That type of arrogance and condescending attitude is really not necessary.
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Postby justjazz » Mon Mar 08, 2010 1:00 am

Until I read further on CCSVI I'll go along with what the M.S. society of Canada has to say. Their comments reflect about what I'm feeling.

http://www.mssociety.ca/cgi-bin/MasterP ... 21_faq.htm
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Postby costumenastional » Mon Mar 08, 2010 1:03 am

Again:

YOUR OPINION IS RESPECTED HERE.

Mine should be also but, whatever works for you.

I happen not to trust any of the 10 neuros i have seen since my diagnosis given the fact that all of them told me different nonsense and no hope whatsoever. I only trust what my body tells me and people who are suffering like me, always saying the truth. And my body tells me that drugs can only have a moderate impact on a terrible disease at a very high cost.
So, keep your faith to your doctor, all of us try to hang from somewhere, no doubt. Just allow others to be more sceptic since they may have more sad stories to share than yours.

MS Societies are not the issue here. Taking things in our own hands is, trying to get closer to the truth. Last time i checked, MS Societies were in a state of deep sleep.

Finaly i feel like saying that you have a bit of catching up to do about CCSVI. For your doctor surely wont.

Feel free to ask whatever you want.
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Postby justjazz » Mon Mar 08, 2010 1:38 am

It sounds like you've been burned by a lot of neuros and maybe had some bad luck with meds. I lucked out I guess. But for the record, when I went off meds for a few months I felt worse. And when I got back on an ABC, I felt better very quickly. So I realized the correlation, and it works for me. This debated procedure's impact on MS is a hypothesis at best. And, being skeptical in nature, I want to make sure that it has been tested on a huge amount of folks who have a huge amount of validated successes. That's the least one should ask on an invasive procedure like this. Anyway, I wish you folks all the best with whatever helps ease this awful disease.
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Postby costumenastional » Mon Mar 08, 2010 1:45 am

Being sceptical is a very good thing. And you ll not find a single person in here claiming that CCSVI is the cure. Trust me on this one.

Our fight is only to take the research further like you and everyone wants and believe me when i say that it is been done mostly because of sites like this.

I also want to note that i wouldnt let anyone put a stent in a vein of mine just yet. I just want to know if my veins are indeed mangled or something.

And the strange thing is that they wont examine me. Noone talks invasive when asking for a damn doppler.

Peace out.
Last edited by costumenastional on Mon Mar 08, 2010 2:02 am, edited 1 time in total.
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Postby sbr487 » Mon Mar 08, 2010 1:47 am

It is a well known fact that people with and without the DMDs reach the same level disability around second decade of the disease. This should give an idea how well the medicines were taking care of the body during that period.

No one wants to get into liberation procedure for fun. For most, there is no other option. And most of them have had their share of DMDs. Of course, if you are still able to do your routine work with 50% effieiency, you would probably wait for dust to settle down. It is a combination of how bad MS has hit you + risk appetite. BTW, how about reading the +ve things liberation procedure has had on them.

If copaxone and betaseron have been highly effective for you, I think you should be running miles away from liberation procedure. Why fix when it is not broken.

Its interesting to see how many people report that DMDs have not worked for them. Its great that it worked for you. Maybe you are also aware that co-inventor of Tsyabri himself does not think this is a safe drug for MS and can have devastating effect on the patients.
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Postby costumenastional » Mon Mar 08, 2010 2:13 am

Well said SBR.

I have not been burned from neuros or drugs YET. This is exactly what i am desperately trying to avoid. To me, the most striking thing is the fact that there are patients who havent been reading about official statistics concerning the effectivenes of crabs. Also, i should notice that when interferone was offered to me, first thing i did was to ask them how exactly it is working. Apparently they dont know exactly how...
Along with the current status of SOME people on crabs it was enough for me to search for something else.
This is the reason i turned to campath. At least, i know what i did to myself, not suggesting for others though in any case. I know that it has been on clinical trials for at least ten years and not licensed yet.

THIS SIMPLY CANNOT BE WITH CCSVI. We need answers NOW!!!
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Postby avantitech » Mon Mar 08, 2010 3:35 am

Justjazz, of course it is your personal decision whether to wait or not.

As for me on 4th March within a month of having had a doppler ultrasound come back with abnormally blood flow measurements I've had a venogram done with ballooning, which was successful and with good outcomes and in my home town by a well known chief radiologist of a good local public hospital.

It the most underwhelming thing for an interventional radiologist experienced in much more complex clinical settings to release a dye, image veins in the neck and balloon them if and where they see a need i.e. if there is an obvious reduction in blood flow as per my case at both the low valves in my left and right internal jugular veins and higher up. Local anesthetic for percutaneous cut and insertion in femoral vein for catheter insertion and no general anesthetic or sedation required. You can see what's happening on LCD screens and interact & talk to the doc.

It is neither complex nor risky and rather routine for these experts who for example do heart and lung transplants in diseased smokers, and much much more difficult surgeries. They often employ these techniques to resolve vein collapses in people hooked up to blood filtering equipment...sometime many times per day every day..in a wide range of patient health conditions.

For me it was the right decision...no side effects, no lasting pain and early improvements. I certainly am not 'cured' of MS because it is a 2 component disease, one vascular and one immunological and intend to continue with anti inflammatory medication (mine is Tysabri). By doing this I am improving my vascular cause symptoms as well as my immune inflammation cause symptoms. Does that make sense?

Have you read Wheelchair Kamikaze's (Marc) latest article of March 7? It makes good reading and it is similar to what is already happening in Melbourne.
http://www.wheelchairkamikaze.com/

It's perfectly alright to have a 'low risk' attitude to things in life.
Take care and all the best.
Last edited by avantitech on Mon Mar 08, 2010 3:40 am, edited 1 time in total.
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