The dangers of false hope ?

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

The dangers of false hope ?

Postby ozarkcanoer » Mon Mar 01, 2010 6:36 pm

I want to discuss the idea of "false hope". Two different MS neurologists have warned us about the possible "false hope" of CCSVI. I have taken the liberty of quoting these 2 doctors from two different sources below :

(1) Dr Daniel Kantor - MS neurologist (google Neurologique)

This is from an online discussion on his website :

"You mention Dr. Dake. As far as I am aware (and I have been told this by Stanford faculty), his uncontrolled procedures have been halted by the Executive body at Stanford after 2 of his patients had serious side effects (one even passed away, unfortunately). Next you ask me, "[w]hat are you so afraid of? " I am afraid of serious strokes, clots, bleeding and false (I truly hope it is not) hope."

(2) Dr Jeffrey Dunn, associate director of Stanford’s MS centre, called on other neurologists to speak out about the potential "dangers" of the unproven procedure: "If I can do anything to protect MS patients from the potentially devastating effects of false hopes or the risks of invasive and unproven treatment, I am happy to do so".

I would truly want my neurologist to warn me and protect me from possible side effects of drugs and dangers of surgery.

But to be protected from "false hope" ? Every time I hear this idea of false hope I get incredibly angry. I remember the first thing my neurologist said to me after my diagnosis over two years ago : "What would you think of an oral pill instead of an injection ? New orals pills are now in clinical trials !". My neuro was trying to give me hope about a drug before it was proven to be safe and effective. So why are these doctors trying to protect us from the "false hope" of CCSVI ? BTW... I am not convinced we really know that CCSVI is the answer to anything yet, but I still have hope.

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Postby AlmostClever » Mon Mar 01, 2010 6:45 pm

The first nuero I saw smiled and said I'd be walking around until I was 80.

I'm 38 and in a wheelchair. Who's preaching "false hope"?
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby cathyb » Mon Mar 01, 2010 7:04 pm

From Wikipedia: The term false hope refers to a hope based entirely around a fantasy or an extremely unlikely outcome.

First, CCSVI is NOT a fantasy, folks have it.
Second, whether or not its outcome is unlikely is based on what YOU think the outcome will be, so unless your neurologist can read your mind, how can he/she know whether you have false hope? For all he/she knows, you think the outcome will be that we will learn more about Multiple Sclerosis. Is THAT false hope? Just sayin.
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False "no hope"

Postby hwebb » Tue Mar 02, 2010 12:31 am

I believe Bernie Siegel said that there's no such thing as false hope, only false "no hope". Hope is a mindset which is a requirement for recovery.
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Postby Asia » Tue Mar 02, 2010 3:35 am

how can you endure without hope? i believe that is impossible. i recently caught myself hoping that i'll walk again someday, it freaked me out a bit (i try not to expect too much) and i can understand the point of those docs. hope can be very destructive when disappointed, but without it you may as well give up already!
MS (progressive type, not sure which) since 1991
Current EDSS 8 (self-assessed)
Not taking any MS meds since 1998
Epilepsy (had 4 attacks to date) since 2004
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Postby fogdweller » Tue Mar 02, 2010 2:59 pm

My neurologist last week said that he knew about Dr.'s like Zamoni and they made him furious, giving hope to his MS patients.

When I first raised the subject of CCSVI he had not heard of it. When I explained the subject and some of the data, that is when he gave me that comment. He had never even heard of it, yet it made him furious that it was giving out hope to MS patients that he was certain was misplaced.

I was so mad that night I couldn't sleep!! How dare he, when he had no idea what it was even all about? It was clear that he felt that the correct mental state for his MS patient's was hopelessness (and resultant despondency).

That was my first and last visit to that neuro. I was looking for a new dr., and will continue to look for someone with at least an open enough mind to read up on new theories and data.
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Postby Loobie » Tue Mar 02, 2010 5:07 pm

Here's something to ponder:

Is hope only real hope if the outcome is exactly what you wanted?

Not to me. Read "Man's search for Meaning". Hope keeps me going. Hell when hope "works" you have no idea if what you're hoping for is even going to come anyway; you're just hoping. So forget a Dr. telling me not to have 'false hope'. I'll have hope any damn way I want to!
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Postby ms2009 » Tue Mar 02, 2010 5:36 pm

Regardless of who is objecting the hope (a doctor or a mechanics), there is something very important to remember.

Patients who are suffering from physical problems need hope to survive. Loosing the hope while having a chronic sickness means someone is looking forward only to getting worse.

Smart doctors are the ones who help their patients to forget about the severity of the sickness even temporary. Who knows, those big brains neuro with the big pharmas might reach a better treatment in few years. So let people have hope in CCSVI for few years although it is efficiency is only 60-70%. MS was a no-hope for more than a century and neuros were doing nothing but telling people that MS is a no hope case.

Now with this new experimental treatment, they want people to continue living on the disabling injections because this is what neuro invented. CCSVI is not a neuro baby so it is bad !!!!

Ladies and gentlemen,
Spread the hope and tell people about the good news although they are not rigorous yet. In the medical field, nothing is 100% rigorous.

When it comes to life and death matters, there is no miracles because an MS patients might get better just by hope and better diet. She might get worse just by stress.

I believe in God and I believe that a cure would come one day either for our generation or the generation to come. However, it is important that all of us have high hope to continue struggling and sustain the patience and the optimism. Dr. Zamboni's method would not have seen all of this echos without the thousands of patients on the internet who were pushing it against the will of all MS societies and neurological institutes.

So for those who are afraid of hope, I tell them if you are really afraid of it, do not be. Hope will draw a smile on your tired faces. If you want others to be less hopeful, then think of the sadness you are bringing to them and to yourself.
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Postby cheerleader » Tue Mar 02, 2010 7:31 pm

I like to keep my science and faith in separate compartments- Dr. Zamboni presented scientific evidence that pointed to a vascular condition he found in MS patients. I took that scientific evidence to other scientists. My believing had nothing to do with Jeff's horrible stenosis (BTW, he was tested in April '09 and treated in May '09....his stenosis was still terrible, and his jugulars were 95% and 80% occluded in 2 instances, separated in time by 5 weeks.)

Jeff and my hope couldn't keep him awake. Neither did copaxone. His stent procedure reoxygenated his brain, and he is now able to get thru the day without falling asleep. He is working, driving, and living again. He was able to go snowshoeing at high altitude this winter...something that was impossible before. This was not placebo, not wishful thinking. This was a scientific opening of closed veins.

If my sharing this information with other doctors and patients is seen as promoting false hope, than I guess I don't really understand the difference between wishful thinking and science. How MRVs and dopplers and venograms are just a fairy tale. How the before and after pics of Jeff's venous system are a nice bit of placebo effect.

This is real, and it needs to be studied. Yes, I have hope...I hope for a world where people are treated with respect, and doctors listen to their patients. So far, I've met many caring doctors who are interested in pursuing the study of CCSVI-as science, not wishful thinking.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Rose2 » Tue Mar 02, 2010 7:39 pm

When I first found TIMS and CCSVI info I read enough to decide I wanted to try it.
I met Dr. Dake. He said he is a CardioVascular surgeon who is diagnosing abnormalities in the venous system.
He is treating some of the abnormalities to open the venous restrictions or occlusions, ie. stents.
He stated that some MS patients had felt better after Liberation, but that was a great unintended result of improving the venous flow.
It is new. He was treating MSers who were knocking his door down to be diagnosed first and then treated second.
He is as excited as we are at how surprisingly well so many (all??) of the Stenters have and are doing.
I am sure he has his theories as to why we feel better. He didn't share them in deep chemical terms with me. He just said he believes that the corrected blood flow thru the brain is important and probably helps.
OK. I did it and I have no more MS symptoms and as far as I am concerned today, I don't have MS.
I have HOPE that everyone who is interested in being diagnosed and/or treated has the opportunity. I want to give you HOPE in that it did work for me.
What didn't work for me??? 10 years ago at diagnosis, the neurologist filled my arms with 4 different CRABS to go home and read and decide what I wanted to do.
HUH? I have never been able to understand how such an important decision was given to ME to make.
BECAUSE- it doesn't matter which one you take!! If it mattered, then the neurologist would be involved in the decision of the drug. My Opinion.
I was sicker than a dog for YEARS from the (blank) Avonex and THAT WAS SUPPOSED TO GIVE ME HOPE??????????????????
THAT WAS WHAT THE NEURO CALLED MY HOPE FOR MY FUTURE.
Thank You God for CCSVI and the HOPE that we can now have.
and the HOPE that we don't have to fight every close minded neuro who didn't think of it.
Please pray with me that OUR HOPE carries us over the hurdle of close minded ones who really don't understand what it is like to have MS.
OR THEY WOULD BE RIGHT ALONG SIDE US IN THE HOPE TO FIND SOMETHING THAT WORKS.
Sincerely, Rose ;))
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Postby Wichita » Tue Mar 02, 2010 7:44 pm

Very well said, ms2009! Amen to that.
Choose Liberation.
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Postby scorpion » Tue Mar 02, 2010 8:22 pm

Cheer what you and Zamboni presented to everyone was not scientific evidence. Scientific evidence is evidence that is supposed to be empirical and also documented using the scientific method. The scientific method calls for scientists to share their data with other scientists so that their results can be scrutinized, tested, and validated. Until this has occured a better way to characterize the results may be to say "preliminary results of Zamboni's study suggest......".
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Postby ozarkcanoer » Tue Mar 02, 2010 8:39 pm

Poor Galileo.... How many centuries did it take for the powers to be to say that he was right ?? I have every respect for many scientific researchers. But the system we have today of funding and publishing and bringing the results of that science to market is deeply flawed. When educated doctors, who are just human beings like you or I, don't just question ideas based on the science or lack thereof, but make patronizing statements about hoaxes and false hopes, then they are just a bunch of windbags. We KNOW that for CCSVI to be accepted or rejected by the scientific community it needs to be researched. That's what we want. That's what Zamboni wants. The problem is, and I know this first hand, academic research is NOT the impartial genius pondering the mysteries of the universe, but real people with real bias and human flaws. Before there is a scientific theory, there is an idea. CCSVI is a GOOD idea ! We are just trying to move the ponderous and bureaucratic scientific and medical world to look closely at CCSVI and it looks to me like it is working. Now that is HOPE !
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Scorpion's remark

Postby fiddler » Tue Mar 02, 2010 10:01 pm

concerning Zamboni's "unscientific work" reminds me of the joke in academic circles, especially in applied research areas: "Sure," the great scientist says, "it works in practice, but it will work in theory?". This isn't a complete put-down of the scientific approach: many things that do work in practice need to be understood in theory so that scientific understanding of the phenomenon is more complete.

From what I can tell, Zamboni did his study scientifically. There are more rigorous tests required to confirm his results and to test related hypothesis, but that doesn't mean that there wasn't a scientific basis to his original work. Nor, does it mean that he was in any way unethical to test for and then treat a vascular pathology - he is a vascular specialist, after all and a doctor who has taken the Hippocratic oath. I, personally, am glad that, even though a scientist, he takes his healing responsibilities seriously.
Dx SPMS in 2004.  Liberated 29/04/2010.
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Postby suze » Tue Mar 02, 2010 11:42 pm

When you've got an incurable disabling disease like ms, you have to have some hope, and you are desperately searching for anything to hang some hope on. Otherwise it is very difficult to stay positive. Not really believing in a cure, but you just need to see a tiny pinprick of light at the end of a long, dark tunnel. I used to hang my hope on the pharmaceutical companies coming up with something to help with PPMS, in other words I had FALSE HOPE.
Having spent a lot of time, as objectively as I can, thinking about a lot of aspects of this, I think there is a better than even chance that at the very least CCSVI will really open up the thinking and research in the future, and at the most with a bit of tweaking a cure will emerge.
Now that's REAL HOPE.
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