Is Liberation treatment really a cure? doesnt sound like one

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

Re: cure

Postby costumenastional » Thu Apr 22, 2010 11:00 pm

THEGREEKFROMTHED wrote:I love reading how people are doing awesome after liberation. It gives me goosebumps. Im not. Its just the way it is. I feel someone has to be the fall guy. Hate me or respect me. I care about people. Its my pride and my demise.


Thank you. I just love the Greek way.
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Re: cure

Postby eric593 » Fri Apr 23, 2010 12:12 am

THEGREEKFROMTHED wrote:but Cured i am not. Just be careful. I know we want relief. Im having an attack of vertigo so bad i did 3 days of shitumedrol. Im not happy about it, but its reality.
People are mortgaging homes, jacking up credit cards, and believe me i understand, but i think its only right that somebody at very least warns that just maybe something may not happen if you get liberated. I just paid american express 5 grand for hotel and meals and flights, and i havent even got my liberation bill yet. But that is what i chose to do. If you choose to do the same. Great. Be the best you can and go for it. But dont get yourself mentally where i did. And dont go there if its going to set you back further financially or mentally or symptomatically. I have put myself into a relapse because i got so worked up. Maybe i restenosed, maybe my veins just suck, who the hell knows?


I'm glad you shared your experience. There are others who have not had a great experience either. ClairePerry comes to mind as another person who had new symptoms develop right afterwards.

Without clinical trials, we really need to have honest reporting from people on how they're doing. I know that I've read quite a few that have had symptoms improve, only to return. Many many people are no longer reporting in, and you have to wonder why. We need to be realistic about this. Having our heads in the clouds doesn't help anyone but those making money off of of liberating us. There is absolutely no point in giving a biased viewpoint, or having people dismiss/ignore what is really going on or having people become defensive when people want a critical assessment and not selective reporting.

I really appreciate those people who are continuing to update their status on the tracking thread. Right now, I think we have evidence that some people have worsened, some people have improved only to experience setbacks with time, and some people have continued sustained improvements. It definitely does not look like a "miracle cure", that's for sure, not if we read the reports critically and with an open-mind. It looks like a lot of people are spending a lot of money for warmer feet.

I hope things get better for you, TheGreek, and hopefully solumedrol helped get things under control. An infection might have been the culprit for your setback, let's hope so and hope you get better soon. Please keep checking in, ok?
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Postby Algis » Fri Apr 23, 2010 12:25 am

I take it that CCSVI still in its infancy.

As a Doctor (highly specialized but cant name him here) said:

Our present diagnostic workup of vein-conditioned MS is incomplete even in the brain. What is being looked for are venous stenoses in internal jugular veins- without even considering whether, or to which extent, such stenoses do actually affect the venous pathway of straight sinus and inner cerebral veins. Unusual widening, valvular incompetence and collateral channels along internal jugular veins are hardly even taken into account.


He also comment on the rest of the venous system:

According to the available evidence, the development of MS of especially
lower segments of the spinal cord depends mainly on anomalies affecting
lumbar veins and their connection to epidural spinal veins, on the one hand, and to inferior cava vein on the other. The azygos vein can only set part of the scene.


Thus; we still have much to learn; but we'll eventually get there, hang on Buddies and Cheers!!
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Postby costumenastional » Fri Apr 23, 2010 12:52 am

Zamboni said it all in one sentence:"you know A PART of your enemy".

It s so true that more research is needed and it s gonna take a looong time.
The fact that scientists are starting to search in other directions besides the pure autoimmune is huge if you ask me and most of all promising. And this doesnt go only for MS...
It is an historical paradigm no matter the outcome.

I strongly agree with what Eric said above, about all kinds of different results so far. I just need to point out that the fact that many are stabilizing or getting improvements has never been seen for a chronic incurable (by the known drugs) disease.
So, i am sure that people who spent a lot of money for warmer feet were initialy going for more.

I am also dissapointed that many others do not update. Can this only be taken as negative? I wonder... Probably so. But a few may just have been keep going on with their lives trying to leave all this behind. Just a few.
Some wishful thinking from my part that is.

Finaly, i am sure that not all liberated patients were online to start with. Many of them are liberated, may be better or worse and none of us know it.
Simka himself has liberated over 200. Are they all posting? If so, they are not all in TIMS from my understanding.
This is why everyone should share. The good AND the bad. But i have a feeling that this wont happen for all kinds of reasons.

Either way it all comes down to each one of us personaly. What should we do? Make our decision upon internet testimonies of any kind?
I dont think so. I ll go for it only because i see it as my last hope for some improvement. If it works out it s gonna be great. If not it wont come as a big surprise. Just as a confirmation that i am indeed f......d.
I should also notice that i dont see how a person with confirmed malformations of any kind in so important veins could let them be regardless of MS.
Last edited by costumenastional on Fri Apr 23, 2010 2:36 am, edited 1 time in total.
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Postby livabird » Fri Apr 23, 2010 2:16 am

Well my wife was liberated yesterday here in Poland... and it is not just warm feet and hands.... she had lost ability to use 2 of her fingers due to being completely numb, they are now working completely.... she is wheelchair dependant, today she got out of the van all on her own and stood unaided... she is reading her book with no glasses... she has no more back pain.
I can honestly say it has been such an experience and has done wonders... yes it is early days, but if this is all we get, then it is worth every penny and every mile i had to drive from the UK to get here.

If you want to follow the journe, read here on TIMS
http://www.thisisms.com/ftopic-11227-0.html
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Postby sbr487 » Fri Apr 23, 2010 2:24 am

livabird wrote:Well my wife was liberated yesterday here in Poland... and it is not just warm feet and hands.... she had lost ability to use 2 of her fingers due to being completely numb, they are now working completely.... she is wheelchair dependant, today she got out of the van all on her on and stook unaided... she is reading her book with no glasses... she has no more back pain.
I can honestly say it has been such an experience and has done wonders... yes it is early days, but if this is all we get, then it is worth every penny and every mile i had to drive from the UK to get here.

If you want to follow the journe, read here on TIMS
http://www.thisisms.com/ftopic-11227-0.html


We definitely more study.
1) To make sure that all the anomalies are clearly understood. Its possible that even Dr. Zamboni might have missed part of veinous system that might play cruical part in MS
2) To make sure we have clear corelation of MS with type of venous defect. If a person having MS defect has multiple venous malformations, whether it is necessary to correct all of them. Case in point - some people after procedure did not get well. Why? Is it because the contributing anomaly was not corrected? (maybe)
3) Can there be a collateral damage after the procedure. Rici is a good example. Manoj reports that he has seen some new defect after the procedure.

One thing that also comes out a bit clearly is that Poland folks seem to know what they are doing since most of the patients seem to get the benefited who go there ... this is where the Dr's skill comes into picture and these folks are real pioneers ...
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Postby costumenastional » Fri Apr 23, 2010 2:33 am

livabird wrote:I can honestly say it has been such an experience and has done wonders... yes it is early days, but if this is all we get, then it is worth every penny and every mile i had to drive from the UK to get here.


Tell them Rick :)
Thanks for the add on facebook!
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Postby livabird » Fri Apr 23, 2010 7:51 am

Please keep in mind although this is a simple procedure it takes great skill in both diagnosing and correcting.
The team on Poland are so skilled in both. Dr Simka is absolutely amazing but is the worlds expert in this field, my opinion of course but i believe others who have had the pleasure of being with him would concur.
He knows exactly how to diagnose the condition and then the skilled surgeons correct the problems under the close eye of Dr Simka...

Yes everyone is different and some have not found immediate effects, but over time they could very well see improvements daily...

Keep in mind what the drugs being pushed do as well, very little effect and massive side affects....
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Postby Squibbles » Mon Apr 26, 2010 1:02 pm

I think that the reason that so many people have not reported their liberation experience could be be because the benefits may not be evident for some time after the procedure and they are waiting for things to happen (good or bad) before making any kind of statement.

I had the procedure last week and have not felt well since. But I will wait before I post on the tracking thread saying that it has not worked for me...
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Postby costumenastional » Mon Apr 26, 2010 10:54 pm

Squibbles wrote:I had the procedure last week and have not felt well since. But I will wait before I post on the tracking thread saying that it has not worked for me...


Thank you friend. I wish you my best.
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Postby livabird » Mon Apr 26, 2010 11:11 pm

I think everything people have said here is bang on...
We need to report both positive and negative.
I will ensure that i continue to update on this, but remember people are posting all over not just in TIMS, but i will try to keep everyone up to date.
Liva continues to feel good, if this is only short term, only time will tell, but even for just a few days to see her smile and laugh and pain free would have made this all worth while.

Please can we stop labelling this as a "Miracle Cure". No one has ever said this is a cure, well not that i know of anyways.

What we are hoping for is a halt to the progression of MS not a cure.
With this we are hoping that some symptoms go away or a less drastic.

At the end of the day blocked anything can't be good for you...
Your toilet or sink is blocked what do you do, you unblock it and the water again flows correctly.
Your arteries are blocked, what do you do, you unblock them.

So why should Veins be different, if they are blocked, then unblock them regardless of the MS.

Liva's terrible headaches are gone for now.... we are convinced that unblocking the veins, keeping in mind that her right jugular was 100% blocked, has helped with this.

Thanks all for the comments thus far, lets keep this going and see what happens in the longer term.

Mr Livabird :D
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Postby musicman » Tue Apr 27, 2010 12:09 am

I recently saw the CTV W5 program with Dr. Zamboni. Seems to me he said for folks to wait until the science proves the theory before getting anything done independent of research studies. I tend to agree. While if it helps people, then more power to ya. I think I'll wait a bit longer before taking the plunge. Just my 2 cents.
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Postby livabird » Tue Apr 27, 2010 12:28 am

Yes i recall him saying that, but he also said if nothing else is working, then do the treatment now.
this was the case with my wife Liva, nothing working with PPMS and she was getting worse daily, so we decided to push forward and we are glad we did.
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Prof Zamboni on 14 April 2010

Postby MarkW » Tue Apr 27, 2010 7:51 am

Prof Zamboni on 14 April 2010 in fact argued that neurologists should agree that:
All pwMS should be treated on compassionate grounds if existing therapies have not stopped progression of MS.
If your MS progression has been stopped by a current therapy then the best advice is to wait for further research. If your MS is still progressing then treatment of CCSVI using balloon venoplasty was Prof Zamboni's advice.

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Vitamin D

Postby FlashHack » Tue Apr 27, 2010 8:27 am

sofia wrote:There is so much CCSIV does not explain, it does not explain how MS is clustered around the world. It does not explain why there is a higher percentage of MS patients born in spring. It does not explain why smokers are over represented, it does not explain, why people with MS is low on vitamin D. But maybe these factors can have an impact on your veines, and how they develop.

I beg to differ. The spring birthdays (mine is in April) are completely linked to vitamin D deficiency in your mother. As you know Vitamin D production is associated to sunlight exposure. This explains the higher incidence of MS (CCSVI) in the northern latitudes as well as the babies born in the spring. As was mentioned in the NMSS web forum, CCSVI is believed to be a congenital malformation occurring between the 3rd and 5th months of gestation.

If only mom had taken a vitamin D supplement during those long winter months, I probably would not be writing this. My older brother, born in September, got the benefit of the summer sun and the vitamin D that it produced in mom helped him build healthy veins.
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