This Is MS Multiple Sclerosis Community: Knowledge & Support

I have done a lot of searching, but have not found any visuals or definitive proof of "Plaques healing after CCSVI treatment"!

Does anyone know of this?

My Aunt who is a Doctor in the US said that a patient can have a "temporary blood high" from the treatment, which eventually goes away?

Anyone?

What would a "temporary blood high" mean, do you think? About a year ago a patient mentioned Dr. Simka saying something similar, that the initial increase in blood flow "shocks" the brain and causes some seeming improvements that do not last. We do someone hear of people who have immediate improvements that are gone within a week. We've heard about plaques disappearing on MRIs but haven't seen any posted that I can remember. It wouldn't prove much one way or the other, since in RR MS, plaques can come and go. I can't remember, with what Dr. Dake presented of his one-year patients, had they had improvements in lesions? It's difficult because his PP patients wouldn't be expected to have much inflammation going on. There are anecdotal stories but nothing that is definitive yet. It would take a big trial and there might be other outcomes to measure besides MRI lesions. MRIs are expensive for trials, our IRs would need funding....

Remember that we still don't fully understand the role of lesions in the pathology of MS. Lesions don't always correspond to the clinical manifestations of MS. A person could have no new lesions yet have increasing disability, and vice versa.





http://www.ncbi.nlm.nih.gov/pubmed/16254697

Plaques, lesions, scars, may be one of the more innocuous indicators of CCSVI. However, as pointed out by Ceci, if they are locations of blood-brain-barrier breach they may be signs of things to come. Dr. Zamboni had a result that showed people who had undergone treatment for CCSVI had *fewer* gadolinium-enhancing lesions. Though, as I believe, many people who have had CCSVI procedures have had subsequent MRIs, I am not aware of any concerted effort to reproduce this finding. Unless that is one of the goals of 'Brave Dreams': I have not read the protocol for that trial.

Though they indeed may be unrelated directly to disability, this one result would have much symbolic significance, since 'MS' is named for these lesions.

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

I'll be anxious to get the 2 year follow up MRI soon and see how these look, I've posted this before, and dutifully attempted to "match slices" from different scans, oldest I had was 2008, the slices are fairly close to each other in orientation, which is important to achieve as close a direct comparison as possible.

As you can see, nothing at the "not quite a year" follow up to indicate a lessening of the lesion load, but then again, they were the same as 2008, to me, it's a wash, no new lesions, and same old ones in the same spots.

I really do think some of us, who are at a certain stage in the MS journey, are experiencing much of our global symptoms strictly due to the CCSVI inflow/outflow factors, irrespective of what the lesions are doing. Dr. Dake mentioned something similiar to that in one of his videos, and I agree. (R.e. global symptoms vs ccsvi correction).

Since the ccsvi pathologies have been corrected, those symptoms remain at bay. Whatever happens to the lesion load, or the MS, or the immune system beyond that remains to be seen of course. It is nice not dealing with DMD's for the time being, subject to a course reversal in the future should circumstances dictate.








Sorry the timeline in these goes right to left. Each set of pics is from approx the same location from 4 different MRI's. [/img]

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

I hope to everything that we see a cessation of progression! It is definitely among the possibilities. About time we got lucky, us MSers.

Agree completely. I have not been a pincushion since August, except for my three dutiful weeks of Arixtra injections.

Prof Zamboni's advice is to remain on DMDs (disease modifying drugs) after you undergo CCSVI therapy, not stop them. Entirely logical in my view as MS is a multi-factorial disease. Treating two sets of symptoms (restricted veins and an over active immune system) is better than just treating one set of symptoms.

Boring, sensible advice I know...........

MarkW

PS Ikulo posted a must read if you are serious about understanding the basics of MS:

Quote:
Discrete, macroscopic lesions are just the tip of the iceberg of MS pathology
Quote:
the correlation between MRI measures of inflammation and neurodegeneration is weak in all disease phases

http://www.ncbi.nlm.nih.gov/pubmed/16254697

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

I read everywhere that the autoimmune theory has never been proven and is probably incorrect...my question is: if people get the CCSVI treatment and continue their DMD's...how will you know which treatment is actually working?

We've heard people on Tysabri especially questioning this, particularly if they started Tysabri and had CCSVI venoplasty near the same time.

For those fortunate enough to have immediate improvements, it would be difficult not to associate them directly with the procedure! I came out of the OR babbling about the colors.

don't know if there are any stats anywhere, but are more people continuing or discontinuing their meds after CCSVI treatment?.....and then there are a lot of people who were never on dmd's to begin with, I assume.

It is definitely not definitive, whatever those particular MRIs show. However, to my very untrained eye, it looks like there is *more* definition in the earlier ones. That might make sense if the action was recovering from the small to the large, or microscopic earlier, macroscopic much later.

About the notion of two treatments: that can be a double-edged sword. From the patient's point of view the more the better; taking a scatter-gun approach might have more chance of hitting a meaningful target.

From the scientist's point of view, changing only one variable at a time is the only approach likely to inform. So that is why clinical trials often insist that either the patient be treatment naive, never having been treated with so-called "disease-modification" drugs, or that a fairly lengthy wash-out period take place.

With that in mind, D. Zamboni is between a scientific rock and a medical hard place. One cannot insist on patients being in a well-designed clinical trial and insist that they stay on their medications, expecting to learn anything which is unassailable. "Evidence, evidence, evidence" is an approach which precludes staying on medication *if* the vein treatment is expected to affect the disease too.

I think he is trying to protect the well-being of the patient in taking this approach, which may be less scientifically sound, but more medically so.

I have had some experience in this ethical mine-field (explosions have not killed me yet). The research I have been involved with at the Ottawa General Hospital has always insisted on wash-outs. The last one I was on was a full year before I could participate, because the last 'DMD' I had been on was mitoxantrone, which was expected to have an effect on SPMS, as was the trial drug. Between that delay and other refusals to restart me on DMDs, and the current refusal based on the assessment that I am too far gone for any yet-discovered drugs to help me, I have been off DMDs for a very long time.

The other conflict one might see in this effort, from a scientific point of view, is in the choice of subject. Dr. Zamboni has said that the people most likely to be helped are those who are in the earlier "phases" of "the disease". Yet those people are also the ones who (if anybody should) should be on "DMDs".

Personally I think that it is convenient that later-stage patients are more likely to have been given up for a lost cause, because these people have the most to gain by being helped at all, in the complete absence of other help, with the extreme case being the dying patient. So they are ideally suited scientifically, having had no 'DMDs' prescribed to them, lately or ever.

The science of medicine has the most to gain by treating the untreatables. The patients have the most to gain by successful treatment. It is a marriage made in heaven.

The name "disease-modifying" brings with it a conundrum. How can a vascular treatment be a disease modification if veins do not cause the disease? If you do not believe the disease has any connection with veins, then a) this treatment does not need a drug wash-out, because they cannot be affected by work on the veins, and b) it cannot matter who receives the vein intervention, among 'MS' patients.

Personally, I believe all 'MS' patients, regardless of their 'progressivity' will benefit from treatment for CCSVI. I think the issue of who is likely to be helped needs more elucidation. The reason more progressive patients, 'primary' and 'secondary' should be first in line is precisely that they have no other hope.

If it is true that the younger ones of these do respond to 'DMD's, that is an argument I abstain from entering, in favour of the ones more educated in ethics than I. However, I think keeping the more progressive patients from this treatment, which has been proven to be safe, has NO justification whatever, and is merely cruelty for its own sake.

It might be said that avoiding cruelty is incompatible with science. If so, "I don't want to be right."

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

Thanks, 1eye, for your response....very enlightening.

Since the venoplasty is considered adjunctive, that is why patients can stay on their DMDs. It might muddy the water for proving things one way or another but so be it. You wouldn't make heart patients come off of whatever medications they take just to test a surgical procedure, it would not be good care.

1eye and I are as always in agreement about the need for compassionate care in patients with advanced MS and CCSVI.

Jackiejay, I've heard it both ways, from patients who stay on their drugs and patients who drop the drugs. It may depend on how well the drug is working and how bad the side effects are. A good portion of patients drop the drugs, that is for sure, but a good portion stays on them, too.

Prof Zamboni's says to remain on DMDs (disease modifying drugs) after you undergo CCSVI therapy, not stop them.
Please do not interpret his advice to meet your own view. I have not found one doctor who treats CCSVI syndrome who says stop your DMDs after treatment. It is a patient view only.

Firstly you must understand that MS is a multi-factorial disease. Treating two sets of symptoms (restricted veins and an over active immune system) is better than just treating one set of symptoms.

In medicine treating two sets of symptoms is done. Eg a stomach ulcer is treated using antibiotics and H2 antogonists.

Until we fully understand the causes of MS, Prof Zamboni's advice is correct.

I know I am being tough and pedantic but someone needs to.

MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

The reason one is not asked to go off any drugs for a surgical trial of cardiac procedures is that going off them may be 'incompatible with continued life.' It would not be good care.

However, if DMDs do what they are advertised to do, going off them is not compatible, necessarily, with continued ability to walk. Is that good care? I think the same assumption is often relied on for drug trials, perhaps without justification, that you would be relying on if you, say, asked patients to forgo their DMDs after you performed CCSVI procedures on them. Namely: that the new treatment will be better, and that the patient will not need the old. That is always what is behind a wash-out, and behind disallowing DMDs during a trial.

The issue of what happens when you indeed experience progression while on such a prohibition is a tough one. I think I lost a lot of ability, to test a drug that in the end did nothing (not to mention one I think gave me heart problems, *and* did nothing). That is the kind of choice anyone faces when answering the call of science. Not to be made lightly. I have heard the term "intent to treat", but I have never been told what it means. Does it mean that it is our intention that this trial will successfully treat you?

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