Keep the faith, my friends!

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

Keep the faith, my friends!

Postby lucky125 » Tue Jun 14, 2011 8:49 am

It was inevitable that the euphoria that surrounded CCSVI during late 2009 and 2010 could not last. This forum was moving so fast, it was almost impossible to keep up during that time. Many of the originally treated patients from Stanford were very active on TIMS. As others of us were treated, we added to the information being shared here.

For better or worse TIMS now seems to be populated by a newer generation of people anxious for answers, seeking advice, and eager to share their success stories. A passing of the torch has been occurring, IMHO. We are lucky to have many of the original members of this group who faithfully participate. Some of us have fallen off of the wagon.

In my case it is because my life has gotten so busy, thanks in large part to my multiple, successful treatments. A friend who I met here way back in 2009 just called to tell me that he has become discouraged about CCSVI. He cited his inability to be retreated because of the BCBS policy of refusing to pay for this treatment. It is so frustrating!

So the euphoria is died down a little. I think that is to be totally expected. We are seeing the results of stents gone bad, insurance denials, and frustrations with government inaction.

Please don't forget that there are thousands of people out there who have stopped being involved on a regular basis because they have been able to get back to their real lives thanks to this treatment.

I started to feel guilty that I have not been as active as I once was. I am a success story. I have needed repeat procedures to maintain my gains, but this condition and its treatment have given me back a life that I feared was lost forever.

I still use a cane and Segway, still need baclofen to manage my (greatly reduced) spasticity, and absolutely know that I have permanent nerve damage from 20+ years of reduced drainage from my brain. But I am still 100% better off than I was before my first treatment in March of 2010.

So please hang in there. The study of CCSVI and its treatment are going forward. The pace is maddeningly slow, but it is happening.

I may not be posting here too often, but I am blogging regularly at www.myliberationadventure.blogspot.com .

The silence that I hear here is the absence of so many who were able to stop focusing on their MS symptoms because they are feeling so much better after Liberation. There are certainly many others who have dropped off the forum due to frustration and poor results, too.

This is the nature of being on the cutting edge of medical discoveries. We are risk takers. Some of us do it because we have nothing to lose, others are trying to preemptively protect their delicate brains.

Whatever our motivation we are all valuable cogs in the wheels of this new science. The medical community is lucky to have so many smart, well informed, brave individuals who are willing to participate in the early days of this new discovery.

I humbly say on behalf of my family and myself, "Thank you, and you are welcome!"
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Re: Keep the faith, my friends!

Postby scorpion » Tue Jun 14, 2011 9:22 am

So the euphoria is died down a little. I think that is to be totally expected. We are seeing the results of stents gone bad, insurance denials, and frustrations with government inaction.



You forgot to metion the recent trial results that are showing nothing even near the 100% correlation between CCSVI and MS that we were originally told. As the percentages dip lower and lower, the euphoria dips lower and lower.
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Postby fogdweller » Tue Jun 14, 2011 9:29 am

Thank-you for the post, Lucky. It was a bit of encouragement I needed.

I am one of the frustrated ones. Joined in Dec. 09 and was in line for treatment at Stanford when they pulled the plug. Finally got treated in So Cal, but the benefits lasted only a couple days, and when I finally got follow-up check-up (at my own expense, of course) both jugs were restenosed with doppler showing reflux. My BCBS is refusing any payment, and I cannot pay the aprrox 10K out of pocket for retreatment that even the doc says will probably not result in little lasting improvement, so I am not sure what to do. I really don't want a stent. With PPMS I am sure that most of my nerve damage is permanent, but not sure what else good might come of retreatment.

The pace of research is maddeningly slow for those of us waiting for results, but in truth it is moving pretty fast for this kind of medical research. At present I am keeping tabs on the work being done and will jump in when I think things have progressed to a point that it is likely worth it.

All that being said, this site is a Godsend to those trying to keep track of what is going on in CCSVI. Waiting for actual study results would be a multi year proposition, and this forum provides useful information, always taken with the appropriate grain of salt, to help those of us considering options.

Everyone on TIMS, keep up the good work and keep posting.
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Re: Keep the faith, my friends!

Postby lucky125 » Tue Jun 14, 2011 10:16 am

scorpion wrote:
So the euphoria is died down a little. I think that is to be totally expected. We are seeing the results of stents gone bad, insurance denials, and frustrations with government inaction.



You forgot to metion the recent trial results that are showing nothing even near the 100% correlation between CCSVI and MS that we were originally told. As the percentages dip lower and lower, the euphoria dips lower and lower.

Scorpion,

I think that some of the not so recent studies out of Europe are suspect. The BNAC study is actually very promising. The spin went anti-CCSVI to placate the neuros during their conference last month, but their raw data supports the high correlation between MS and CCSVI.

Joan has some invaluable information on the Buffalo study here: https://www.facebook.com/note.php?note_ ... 9853622211

We should all be cautious in our optimism, but for people like me who are living the dream, it is hard to share your negative outlook.

No MS drug has ever made me feel as well as I do since treating my veins. I will continue to do everything in my power to support the investigation of this theory. Which ever way it leads, I want to see the research done!
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby fogdweller » Tue Jun 14, 2011 10:31 am

Yes, scientific scepticism is good all the way around, but even with some regression toward the mean in correlation between CCSVI and MS, it is pretty clear there is something there. Some of us were hopeful that this was in fact a rather difinitive cause, which a 1:1 correlation would have suggested, but even with less than that, it is clearly important. Now to figure out why and how.
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Postby Cece » Tue Jun 14, 2011 10:37 am

Lucky, it is great that you are one of the success stories!!

I think the advent of insurance companies crafting policies specifically against CCSVI treatment is sobering. Also sobering is, amidst the stories of patients with great results and those with small results, there are those who have had vein damage.

Still, I am still pretty euphoric, both with what I have gained back as a result of having had the procedure and with the potential of CCSVI to transform how our disease is understood and treated.

One of the changes from how it was in 2009 is a good one! Back in 2009 and early 2010, CCSVI was largely a patient-driven phenomenon outside of Italy, where Dr. Zamboni continued his research. We brought the research to the IRs, we were convincing, we brought more and more IRs into this. Sometime in 2010, that shifted, so that the IRs were debating this among themselves and it was no longer so strongly patient-driven. We played our role and now they have taken up the banner and are playing theirs. Conferences, symposiums, doctors treating and gaining experience, collaboration, research studies....
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Postby lucky125 » Tue Jun 14, 2011 10:37 am

fogdweller wrote:Yes, scientific scepticism is good all the way around, but even with some regression toward the mean in correlation between CCSVI and MS, it is pretty clear there is something there. Some of us were hopeful that this was in fact a rather difinitive cause, which a 1:1 correlation would have suggested, but even with less than that, it is clearly important. Now to figure out why and how.


Amen, sir!
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby Cece » Tue Jun 14, 2011 10:44 am

Some of us were hopeful that this was in fact a rather difinitive cause, which a 1:1 correlation would have suggested, but even with less than that, it is clearly important. Now to figure out why and how.

I think it's still too early to know even if it is a 1:1 correlation or not. We cannot make too much of research studies that use imperfect imaging. Clinically, our doctors are seeing very high rates of CCSVI in their MS patients. I would not give up hope yet.
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Postby MrSuccess » Tue Jun 14, 2011 11:17 am

keep the faith ? Whenever did the faith go away ?

We are talking science here people , not faith.

And that science is advancing each and every day.

The base of CCSVI medical experts and their methods and understanding

of CCSVI is ever EXPANDING . That is telling.



This will get some chins up off some chests ......... ALWAYS remember Dr. Zamboni's ORIGINAL papers reporting his great discovery .
What I found most remarkable ........ were the results [ 4 hours to 4 day's ] of his patients that were treated the SECOND time , and gained back the benefits , they had from the initial Liberation treatment.


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Re: Keep the faith, my friends!

Postby Lyon » Tue Jun 14, 2011 12:24 pm

..
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Postby 1eye » Tue Jun 14, 2011 3:18 pm

I can wait for the science to catch up with reality. It's deliberately, sadistically slow when it depends on the neurologists and the MS Societies and the so-called disease-modifying drug sellers for support. None is likely forthcoming, if there is the microscopic chance that the research will reveal the truth about "MS", anything new about CCSVI, or its treatment.

I am afraid there are facts of life, like the way neurologists do "MS" research, and the way the mafia does business, that have to be put up with much of the time.

You are right, though. There is every reason to have hope that this is really the answer to this weird condition. I now average about 5-10k on a recumbent tricycle, more than once every second day, for 1 to 1.5 hours, often in hot noon sun, have a tan, weigh less than I have since 31 years ago when I got married, and according to my doctor this afternoon, have a BP of 120/60.

Before this spring I had not been outdoors for more than a few minutes in about four or five years. Last summer I had been full time in a wheelchair for about eight months. It's just a smidgen different. Not euphoric, just different.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby fogdweller » Tue Jun 14, 2011 3:58 pm

1eye wrote: It's deliberately, sadistically slow when it depends on the neurologists and the MS Societies and the so-called disease-modifying drug sellers for support. None is likely forthcoming, if there is the microscopic chance that the research will reveal the truth about "MS", anything new about CCSVI, or its treatment.

I am afraid there are facts of life, like the way neurologists do "MS" research, and the way the mafia does business, that have to be put up with much of the time.


I cannot agree with this.

I think that this "new" theory is a real paradigm shift for most neurologists, and with all of the false hope that has appeared over the past century, they are understandably slow to leap to accept something so different, but they are not being sadistic, and have no incentive to hope harm for their patients.

Some of the drug companies may resist research that will remove some of their more profitable drugs, but the stent manufactures, angioplasty catheter makers and IVUS manufactuerers are equally motivated to prove it true. Medical science just takes time, too much time it always seems, but there you are.

Insurance companies are another story. Their only motivation is to avoid paying for anything. Of course, if we can demonstrate that they can stop paying for the very expensive DMDs and instead pay for one (or two) one time surgical fixes, they will jump on board. Now, however, the docs are all saying that even if the angioplasty seems to work, keep taking the drugs.
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Postby cheerleader » Tue Jun 14, 2011 4:47 pm

thanks for stopping by and updating us, Nicole. Glad to hear you continue to do well. So does Jeff, now 2 years! We're very thankful.

Your blog link didn't work (period at the end), so I'll post it again. People should check it out...you're a great writer.
http://www.myliberationadventure.blogspot.com/
take care,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby 1eye » Tue Jun 14, 2011 5:09 pm

I cannot agree with this...

No, there are those that are ok, and to their patients, I'm sure they make up for the ones we are all so familiar with.

I am however, disillusioned and fed up, because here in the capital of my country, one of the principle deniers wields so much power and influence, with the MS Society, the local medical establishment, and the federal government, that our protests, pleas, and petitions are all routinely ignored. I have not got, and have been told I probably cannot get, a local neurologist.

There are the refusal to support trials of testing of venoplasty by the CIHR, the connection with the Serono scandal, the massive press campaign after the questionable reading given to the Buffalo results, and most recently for me, what looks like fancy footwork with the results of an ultrasound trial. I could go on, but you get the picture. I am, shall we say, exercised somewhat about what I see as dirty pool being played against a lot of sick and dying people.

If some of them are ashamed to be associated with this profession, I can't blame them. I agree it's all about money. It's enough to make a person have ambitions of poverty.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby MrSuccess » Tue Jun 14, 2011 5:12 pm

Oneeye- yes there is frustration ..... but I agree with fogdweller .... in that CCSVI has taken many people by surprise . And all fog's points are just a repeat of what I have been saying for some time now ...........

the KEY will be getting the Insurance companies to DEMAND pwMS
undertake the procedure ....... a procedure that should cost UNDER $2 K .

This makes repeat procedures [ a standard practice I predict ] cost effective ...... coupled with minimal DMD's.

This can be accomplished ...... if everyone rows in the same direction.


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