DR. SIMKA reply about re-stenosis

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

Postby BooBear » Fri Jun 04, 2010 11:25 am

concerned wrote:My mother does have more realistic expectations now, but it's still a common thing with her and with here that this is being hidden or blocked because how much money pharmaceutical companies stand to loose but I haven't seen anything that would suggest that people should stop taking their medications and just get "Liberated" (how i wish there was a less emotional word for that.)


The word "cure" was used by the media. I have not seen anything from Dr. Zamboni or anyone other advocate doctor that says "cure." I don't like using those terms, either, because they are too broad and expose us to doubt. I feel the same about terms like "scam", "hoax" and the like for the same exact reason.

I will say, though, that there must be a reason that things aren't moving as fast as they should. Let's make an easy analogy.

Let's say I had a heart attack, God forbid. Would I be denied an angioplasty or arterial stent because I had MS? Of course not.

If I had renal failure and required dialysis, would they not treat my vein with angioplasty if it stenosed? Of course they would.

If I had varicose veins, could I get them treated right now? Yep. MS or not.

So why can't we treat a vascular condition because we have MS?

People are feeling better. To varying degrees, yes- but in reality, that is how people are doing now on traditional treatments. Some people respond well to CRABS. Some progress in spite of them- like me.
So why is there a concern in the medical community over the variety of responses to the treatment?

It doesn't add up.

I could understand the concern if we were talking about taking arsenic in small amounts. Or if we were talking about grafting the veins, or brain surgery to remove lesions. Criminy, those are all things that warrant a whole lot of research and proof before anyone moved forward.

But a vascular issue to be treated? With a known procedure that is used thousands of times a year? With positive results for most?

Why the hell not?
Three veins angioplastied.  One renewed life.  
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Postby concerned » Fri Jun 04, 2010 2:59 pm

Well I have varicose vains and they injected them with salt water. If you come up here I could inject some saline into your jugular if you want.

But I have really bad varicose vains, and i was never offered venoplasty. Am I being discriminated against?
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Postby concerned » Fri Jun 04, 2010 3:10 pm

So balloon angioplasty and stenting is done thousands of times a year on the IJV????
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Postby scorpion » Fri Jun 04, 2010 3:29 pm

1. Why can's we treat a vascular condition because we have MS? Because no on knows whether there are any consequences to this so called "vascular condition" known as CCSVI. According to the Buffalo study 25% of people with MS have CCSVI? DO they report any problems?

2. Why is there concern in the medical community to the variety of responses to the treatment? Because MS is relapsing and remitting so stating that some people feel better after one year does not have a lot of value. It could be that some people have benefited from the treatment or it could be that what people were experiencing was nothing more than a placebo effect.

Concerned I agree with you that to use the word "liberation" is very misleading. Liberation means to free from something and I have heard very few people actually claim they have been freed from MS. Unfortunately it looks like we are stuck with that term.
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Postby tazbo » Fri Jun 04, 2010 4:08 pm

Liberation was the term used for liberating the blood flow...it has been media morphed as meaning Liberation as setting one free. Languages can be mis-understood...just like"scheme" in the UK means different than N.A. A housing scheme is like we call a sub-division.
Also...the percentage numbers are a story of mis-understanding all there own.
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Postby costumenastional » Sat Jun 05, 2010 4:05 am

What if CCSVI really causes MS in some cases? What if a blocked vein leads to what Zamboni claims? What if one is born with defects in his/her vein system and one day he wakes up with an immune system that has gone crazy? What if our nervous systems have started to deteriorate because of this blood flow problem?

Do you think that after 10, 20, 5, 1, 100 years, everything will suddenly be ok just cause you opened a vein? What if something else has already started because of CCSVI, something that will never stop to destroy us?
Should we leave those veins untreated?

It is too early to criticize CCSVI based on "liberation's" impact on symptoms.
And there is no reason to live with blocked veins. They will get their methods perfected soon enough. He who has the money will be able to get a proper fix in a couple of years time. Without risk of restenosis and such.

All i read is for dangers of angioplasty when this is really nothing compared to chemo side effects.

I feel better AND worst post op. My hands are stronger, my eyelead is not dropping any more and my fatique is a bit better a month after my visit in Bulgaria.
On the downside, there are some minor new symptoms like spasms in new places.
Only a couple of days ago i experienced a major vertigo event, first time for me. It lasted over 12 hours.
Is "liberation" to be blaimed? Probably so. But for me, it simply means that there IS a relation. At least it seems like it.

All i know for sure is that pre op i was declining Very fast and heavy chemo didnt help a bit. Even if ccsvi is only jusy a factor that contributes to a multifactorial disease it must be treated somehow.
I am not cured but i feel better to have proper blood flow out of my CNS.
Now, i only have to make sure i keep it that way. And who knows? Maybe some day i will feel closer to normal.
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Postby costumenastional » Sat Jun 05, 2010 4:14 am

scorpion wrote:According to the Buffalo study 25% of people with MS have CCSVI? DO they report any problems?


It surprises me that you have missed it. There was a post in here where Zivadinov stated that a 22 year old girl who was found to have ccsvi reported a CIS six months after her Buffalo screening. They found 2 MS lesions in her brain.
She was the sister of an MS patient that had undergone ccsvi screening as a "normal" control.

So, noone knows yet. Only that there IS a relation between the two conditions is to be taken for granted. Nothing more, nothing less..

And that "liberation" wont be the quick fix we all wanted to be. But lets give it some time. What else can we do?
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Postby Zeureka » Sun Jun 06, 2010 1:43 am

costumenastional wrote:It is too early to criticize CCSVI based on "liberation's" impact on symptoms.
And there is no reason to live with blocked veins. They will get their methods perfected soon enough...I feel better AND worst post op. My hands are stronger, my eyelead is not dropping any more and my fatique is a bit better a month after my visit in Bulgaria.
On the downside, there are some minor new symptoms like spasms in new places.
Only a couple of days ago i experienced a major vertigo event, first time for me. It lasted over 12 hours.
Is "liberation" to be blaimed? Probably so. But for me, it simply means that there IS a relation. At least it seems like it.

All i know for sure is that pre op i was declining Very fast and heavy chemo didnt help a bit. Even if ccsvi is only jusy a factor that contributes to a multifactorial disease it must be treated somehow.
I am not cured but i feel better to have proper blood flow out of my CNS.
Now, i only have to make sure i keep it that way. And who knows? Maybe some day i will feel closer to normal.
Costumenastional, it's encouraging for me to hear we are going throug a similar kind of experience :) For me also improvements and only these transient headaches, which hopefully transient. But even if very annoying for the moment, somehow show me that there is something going on in my body related to change of blood flow... lets see how the next months will work out for us :idea:
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Postby LR1234 » Sun Jun 06, 2010 3:26 am

Cost, I also have been suffering with vertigo, unfortunatly mine has lasted 7 weeks and even though it has eased off a bit now I am still having balance/dizziness issues. I have had vertigo in the past but never like this.

I never really suspected the procedure I suspected my chiro neck clicking but I suppose the procedure could cause vertigo.
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Postby Billmeik » Sun Jun 06, 2010 11:43 am

1. Why can's we treat CCSVI a vascular condition because we have MS? Because no on knows whether there are any consequences to this so called "vascular condition" known as. According to the Buffalo study 25% of people with MS have CCSVI? DO they report any problems?



I guess people are so used to you being the skeptic that nobody reads your posts.


According to the Buffalo study 25% of people with MS have CCSVI


this is probably just a typo. You mean 25% of people without MS have ccsvi.

Your idea that ccsvi shouldn't be treated because we don't know if there are any consequences to this so called "vascular condition" is pretty flawed. You are saying we don't know the consequences of being normal and healthy in the veins. Ya we do, because most people are like that. You sound like a neuro making idiotic judgements on vascular stuff based on years of drug tests. Going form ccsvi to normal veins is going from abnormal to normal.
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Postby patientx » Sun Jun 06, 2010 12:03 pm

Billmeik wrote:Your idea that ccsvi shouldn't be treated because we don't know if there are any consequences to this so called "vascular condition" is pretty flawed. You are saying we don't know the consequences of being normal and healthy in the veins. Ya we do, because most people are like that. You sound like a neuro making idiotic judgements on vascular stuff based on years of drug tests. Going form ccsvi to normal veins is going from abnormal to normal.



Given that the CCSVI condition is such a recently discovered phenomenon, how do you know with such certainty what is "normal" in the venous circulation? And how do you know messing with this will not create more problems for the patient? Read the post immediately before your last post.
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Postby Zeureka » Sun Jun 06, 2010 12:22 pm

Billmeik wrote:
According to the Buffalo study 25% of people with MS have CCSVI


this is probably just a typo. You mean 25% of people without MS have ccsvi.
And even if the percentage lower than the around 94% found on average by others in their studies (if average taken of Zamboni, Kuwait, Simka, Mamoon), in Buffalo they did not check for CCSVI disorders via catether venography combined with IVUS...
And we know by now that the CCSVI duplex doppler exams and/or MRV - combined or alone - do reveal some, but not necessarily all problems. Additional CCSVI issues are sometimes only discovered via venography (and IVUS in particular for azygous and also generally venous valve issues, it seems) during the procedure itself.

Also, there could be even other veins in addition to the jugulars and azygous that could be affected by stenosis or pathologic valves. That could mean a 99%-100% MS-CCSVI link without us knowing yet as the applied study designs and protocols (that have been designed at the max of possible knowledge and expertise up to that point) do not include all now further evolving methods of analysis.. a constant learning process...
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Postby Trish317 » Sun Jun 06, 2010 12:33 pm

patientx wrote:
Billmeik wrote:Your idea that ccsvi shouldn't be treated because we don't know if there are any consequences to this so called "vascular condition" is pretty flawed. You are saying we don't know the consequences of being normal and healthy in the veins. Ya we do, because most people are like that. You sound like a neuro making idiotic judgements on vascular stuff based on years of drug tests. Going form ccsvi to normal veins is going from abnormal to normal.



Given that the CCSVI condition is such a recently discovered phenomenon, how do you know with such certainty what is "normal" in the venous circulation? And how do you know messing with this will not create more problems for the patient? Read the post immediately before your last post.


But it's not a "recently discovered phenomenon". Venous stenosis exists, and is corrected all the time, in dialysis patients. They aren't denied the procedure because they have kidney disease.
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Postby Trish317 » Sun Jun 06, 2010 12:45 pm

Zeureka wrote:
Billmeik wrote:
According to the Buffalo study 25% of people with MS have CCSVI


this is probably just a typo. You mean 25% of people without MS have ccsvi.
And even if the percentage lower than the around 94% found on average by others in their studies (if average taken of Zamboni, Kuwait, Simka, Mamoon), in Buffalo they did not check for CCSVI disorders via catether venography combined with IVUS...
And we know by now that the CCSVI duplex doppler exams and/or MRV - combined or alone - do reveal some, but not necessarily all problems. Additional CCSVI issues are sometimes only discovered via venography (and IVUS in particular for azygous and also generally venous valve issues, it seems) during the procedure itself.

Also, there could be even other veins in addition to the jugulars and azygous that could be affected by stenosis or pathologic valves. That could mean a 99%-100% MS-CCSVI link without us knowing yet as the applied study designs and protocols (that have been designed at the max of possible knowledge and expertise up to that point) do not include all now further evolving methods of analysis.. a constant learning process...


You're right, Zeureka. Dr. Noda, in Spain, has been treating MS patients with arterial blockages. So, the arteries may also be involved. It is definitely a constant learning process. But, to my very unscientific mind, it seems foolish for anyone to completely rule out a vascular connection in MS.
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Postby Zeureka » Sun Jun 06, 2010 1:03 pm

patientx wrote:
Billmeik wrote:Your idea that ccsvi shouldn't be treated because we don't know if there are any consequences to this so called "vascular condition" is pretty flawed. You are saying we don't know the consequences of being normal and healthy in the veins. Ya we do, because most people are like that. You sound like a neuro making idiotic judgements on vascular stuff based on years of drug tests. Going form ccsvi to normal veins is going from abnormal to normal.

Given that the CCSVI condition is such a recently discovered phenomenon, how do you know with such certainty what is "normal" in the venous circulation? And how do you know messing with this will not create more problems for the patient? Read the post immediately before your last post.
We do not know yet, and it seems depends on profile, each patient different, but since there are also improvements it would seem that it isn't so normal to have closed veins... I have actually been wondering whether the rather light background headache today is worse than my instability and fatigued cloudy brain was before...in a way I think today enjoyed the more still perceived "fresh being here feeling" - despite the headache in the background that I got a bit lighter in intensity today and now increasing a bit in evening...isn't that weard...

and transient issues can accept, if they are transient and feel generally better...there may be exceptions and lets see the next weeks/months - but that's a decision each patient can decide for himself - noone forces anyone to do the procedure now...on TIMS we report of our experiences about ups and downs. And from the tracking project the conclusions for each individual person can be drawn.

CCSVI is certainly not the solution for ALL MS symptoms (and noone of the doctors/researchers says that!) and in my view in particular not at a certain age and more years of established MS. Our body in my view very likely indeed got used/adapted to certain "wrong" blood flow dynamics (which does not mean it wasn't potentially damaging) and some of the myelin damage will be difficult to repair - except could with longer time...whether to adapt that is weeks, to repair 1-4 months or longer...

But if CCSVI congenital, I still wonder whether it might be the case of a potential full or more significant prevention to develop MS before damage is done in younger or newly diagnosed people...and the impact of this could be dramatic.
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