This Is MS Multiple Sclerosis Community: Knowledge & Support

http://www.buffalo.edu/news/13776

No role for endovascular treatment of CCSVI outside of approved clinical trials? My own jugulars were 99% and 80% blocked. Treatment was life-changing. I can't support Dr. Zivadinov's belief that there is no role for standard angioplasty on blocked blood vessels such as I had. Yes, do the clinical trials, but no, don't hold us back from seeking treatment.

The fact is that CCSVI is a vascular problem that has all kinds of ramifications for other systems besides the CNS, most notably the cardiovascular system. It sounds as if Dr. Zivadinov is using the same discriminatory illogical arguments against the CCSVI procedure being used on people who have all manner of cerebra-vascular problems, just because it is the brain that is being drained! Does that mean people should stop having heart operations because the brain is peripherally involved? We must stop this stupid turf-war before many more people's minds and lives are lost to it!

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Dr.Zivadinov is saying EXACTLY what Dr.Zamboni has said from DAY ONE .

This research is BEST conducted in a formal CLINICAL TRIAL.

as we now know ...... CCSVI has spawned medical tourism nightmare stories.

I think this is Dr.Zivadinov's way of dealing with this problem.

On the other hand ....... many pwMS have been treated for CCSVI by some very competent medical professionals ..... with great success.

I guess there is indeed ..... more than one way to skin a 'cat.


MrSuccess

What if after dr Zamboni's initial study his advice for research had inmediate follow up????

Where would we be now with ccsvi??

Ever thought about that??


(and indeed; dr Zivadinov repeats the words of dr Zamboni)

Both doctors should be advising follow-up with timelines during and after studies. Follow-up I would expect to differ depending on who is advising it. If they are being realistic, and accepting the fact that these procedures are going to take place, it would be nice if they advised on follow-up outside studies, but I guess we can't expect miracles.

Merely echoing Dr. Zamboni does not address the rather important matter of follow-up. The people who have been left in limbo are those (especially Canadians) who have had to go out-of-country for the procedure.

The explanation for the procedure being done at all is that it is being recommended by a private doctor, and that transaction is under private medical advice. Being realistic medical tourists as you call them (I would call them medical refugees) cannot expect to make regular visits too their out-of-country doctor.

It is incumbent on them to get follow-up at home. If there are no complications, that is fairly straightforward. But if there are, follow-up can become difficult, with some doctors refusing further treatment. I guess "brother's keeper" comes in here too.

I never expected I'd see the day medical people would refuse to see a person because they'd had doctors looking after them elsewhere. I think it's shameful.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Supposedly CCSVI research is moving much faster than would be typical and that this has been a result of the patient advocacy and social media explosion that we all played our role in. But I am impatient that we're not further along than we are.

I am in disagreement with Dr. Zamboni on the matter of treatment outside of trials. Alas it is so. The medical tourism is not good. Cash grabs are not good. Not working to perfect the procedure is not good. But getting the procedure years before I could have if I'd waited for trials? And being healthier than I have ever been? Unbelievably good.

Dr.Zivadinov's opinion is that CCSVI needs to be examined in a Clinical setting. Who can argue with that logic ? And this is now underway . Finally.

Starting with Dr.Zamboni [ perhaps Dr.Schelling should get credit ] the common denominator with all things and people CCSVI ..... the courage to undertake entry into uncharted territory . This is true leadership . This includes Cece & 1eye. And Jeff Beal . And Dr.Scalfani ...... and the list goes on . Courageous risk taking people.

At the risk of oversimplifying the issue [ CCSVI ] I offer my rendition of the problem CCSVI has with getting faster [ if at all ] acceptance by mainstream medical treatment.

Here it is : On one hand we have the Neurologists . They say MS is a dysfunction of the nerves within the body. More or less .... an ELECTRICAL malfunction.

On the other hand .... the new theory is that a PLUMBING malfunction causes MS .

Those in the ELECTRICAL camp ..... cannot [ or will not ] accept the newfound theory.And cannot grasp the concept of Electical & Plumbing being at fault or cause.

I say ..... see what happens when the plumbing in your house leaks onto the electrical wiring ....


For the record : MrSuccess has ABSOLUTLEY NO DOUBT that CCSVI is a real and valid contributor to MS. The brain is an amazing organ . The -slightest- blood flow restriction INTO it ..... can be lethal. We now know the effects of restricted blood OUTFLOW out of the brain . The "S" in MS ..... means "scars" . You have MULTIPLE SCARS.

Right or Wrong here is my MS theory : Your heart sends pressurized blood into your brain. This is a FACT. In a normal heathy brain .... the blood returns back to the heart. A smooth circuit . Blood IN . Blood Out. Blood IN. Blood out.

Now restrict the blood outflow returning [ CCSVI ] to the heart. Those tiny minute blood vessels in your brain are now as full of blood as they can possibly be. Some start to leak .
Your healthy IMMUNE SYSTEM activates and moves in to repair the breech.

This action results in an INTERNAL SCAR. Much like a nasty EXTERNAL scar .... they stay as permanent evidence that your IMMUNE system has been ACTIVATED and made a repair.

As a long time follower of all things CCSVI ..... I can assure you that Dr.Zivainov is doing everything possible to root out the mystery that encompass' MS . He has his methods that seem to puzzle and irk many ...... but are clear as a bell to MrSuccess.

In time ..... CCSVI and MS will be linked back to TRAUMA induced to the head, neck or back. Pediatric MS? Forecep or difficult delivery. Everyone has slipped , fallen , or had some force of trauma put upon them over their life.

Mark my words : TRAUMA >>>> CCSVI >>>> MS. Collected data .... past .... and FUTURE will prove me right.


MrSuccess