Dr. Dake's comments

[scorpion]

Vein opening is unlikely to help regenerate damaged myelin, which causes the movement difficulties, Dake said, but opening blocked veins looks like it may help alleviate fatigue, at least in people with relapsing-remitting MS.

"It's a stretch to think opening up veins is going to deal with or reverse an injury that is due to demyelinating plaque, whereas the symptoms that are more general, such as fatigue and brain fog that are much more related to an obstruction in venous outflow from the brain -- those could potentially be reversed," he said.

The above comes from Dr. Dake himself fro, this article.
http://www.businessweek.com/lifestyle/c ... 48915.html

So what about the people who claim to be able to throw their wheel chairs to the curb after receiving this procedure? According to Dr. Dake opening blocked veins is unlikely to help with movement difficulties so is Dr. Dake incorrect?

[CCSVIhusband]

I've seen it with my own eyes and so have many others, and so has he - Dr. Dake (see his patient "Rose2"'s report).

So ... "unlikely" doesn't mean doesn't happen.

[codefellow]

I think Dr. Dake is just trying to be very cautious about what he claims about treating CCSVI when talking to the press. We THINK some MS damage may be permanent, but this is the first time, ever, where there was at least some hope of stopping what (maybe) is causing MS. This is a LOT of unexplored territory. We really don't know how much ability the body may or may not have to heal itself from neurological damage. This is the first time any treatment has even given it half a chance.

[Cece]

Areas of myelin or gray matter that are dead will not rejuvenate. But in MS, much of our myelin is only damaged. With proper blood flow, it can function better and even, over time, have some healing.

I see his statement as the usual distinction between treating CCSVI and treating MS. They can and should be seen as two distinct associated disease processes. Because we do not have the answers to MS does not mean we can't look for the answers to CCSVI.

[scorpion]

Areas of myelin or gray matter that are dead will not rejuvenate. But in MS, much of our myelin is only damaged. With proper blood flow, it can function better and even, over time, have some healing.
I see his statement as the usual distinction between treating CCSVI and treating MS. They can and should be seen as two distinct associated disease processes. Because we do not have the answers to MS does not mean we can't look for the answers to CCSVI.

Do you know if Dr. Scalfani has ever addreessed this question?

[blossom]

very well put cece. and, looking at treatment for ccsvi, along with the angioplasty, it should not be put to the side and downplayed as to why these veins got how they are and will things like , but not limited to, vit d, possibly oxygen therapy or chiropractics play a role in helping some cases of ccsvi. before or after angioplasty.

ccsvi has definitely opened up pandora's box--in a good way!!

i don't feel dr.'s like dr. zambonni,dr. dake, dr. sclafani, dr. mehta, dr. flanagan and the rest would be putting all the time and effort they are if they had not seen with their own eyes, improvements in some of the patients they treat.

[Billmeik]

really I think the whole model of 'remission' is being replaced by the rapidly growing body of work on 'plasticity', where a brain learns to do the same task in another area. Older static 'cubby hole' models of the brain might be less valuable than hoefsteader's 'careenium" where electrical patters constantly careen around the brain, stopping to use neurons fairly arbitrarily. I believed this more before my hand went seemingly perma-numb. Still the model that tasks have to 'heal' is perhaps less valid than that tasks have to be relearned. This makes physical therapy in cns illness absolutely imperative.


http://philosophyandpsychology.wordpres ... careenium/

[Rosegirl]

MS has always been problematic because it comes and sometimes goes and patients each seem to have a unique set of symptoms.

My only symptom is that I can barely walk and this has been true for more than five years. But during that times, there have been multiple instances where I could walk perfectly -- for less than five minutes at a time.

That leads me to think that these wonderful but short periods are not "remissions" since they are so short. I suspect I have a problem with a valve. My experience leads me to believe that, when that valve is corrected, I will again be able to walk perfectly -- for an extended period of time.

This is probably not the case for many MSers, but it seems that many doctors report about half of their patients have valve problems.

So that's my theory for those whose symptoms fluctuate quickly.

[Cece]

Areas of myelin or gray matter that are dead will not rejuvenate. But in MS, much of our myelin is only damaged. With proper blood flow, it can function better and even, over time, have some healing.
I see his statement as the usual distinction between treating CCSVI and treating MS. They can and should be seen as two distinct associated disease processes. Because we do not have the answers to MS does not mean we can't look for the answers to CCSVI.

Do you know if Dr. Scalfani has ever addreessed this question?

Sort of...
http://www.thisisms.com/ftopicp-108376.html#108376

It was also raised as a question at the Brooklyn symposium, in regards to research on diabetic rats (?) in the 90s, who had better peripheral nerve conduction when better venous flow to the areas was restored.

[scorpion]

So it seems at this point there are just guesses as to how increased blood flow can improve the functioning of myelin. I have read where people claim to not have feeling in their finger(s) and suddenly after the procedure the feeling returns. Spontaneuos myelin regeneration because of increased blood flow? I believe initially it was insinuated the increase in feeling was related to blood flowing into the extremeties but obviously it is not lack of blood flow that causes the numbness but damage to the myelin so I just can not undertsand these spontaneous recoveries(especially since,according to this crowd, placebo is out of the question). I think Zamboni discussed such improvements in his inital patients? It would be intersting to hear his reasoning behind the instant improvement in myelin function in some patients. It is a shame that everyone does not want to discuss/consider placebo effect becuase if there are improvements from the liberation procedure it would be nice to see which ones are truly due to the procedure and which ones are related to placebo. I guess there are some who feel that admitting some people experience placebo would lead to a slippery slope but I think it could only get us closer to the truth about the true outcomes of this procedure. Of course, as you know, this is all coming from the one of the "septic skeptics" so this is not likely to be met with much support!

[cheerleader]

We need to separate gray matter damage from white matter damage---

Dr. Dake is looking at gray matter atrophy in the patients he's treated so far and also in his new study...many progressive MS patients are showing gray matter atrophy. As we all know, it's not purely about white matter lesions, and gray matter seems to be a better biomarker of disease progression and disability. Jeff, who was diagnosed RRMS in 2007, did not have gray matter atrophy, but had 20 lesions. He still does not have gray matter atrophy, and his lesions are stable--some appear to have shrunk.

Here are several studies linking gray matter atrophy to disability:
http://www.ncbi.nlm.nih.gov/pubmed/18661561
http://www.nejm.org/doi/full/10.1056/NEJMcibr0905482
http://www.ncbi.nlm.nih.gov/pubmed/18570297

Also remember, brain plasticity accounts for re-routing and return of function in stroke patients, and may account for pwMS who recover function and have cerebral lesions...but spinal damage is often permanent, due to the lower number of axons to recruit.

The premise behind intervention is to stop brain atrophy before the disease becomes progressive. We'll see how that goes...
cheer

[cheerleader]

Scorp---just saw your new comment. As far as spontaneous return of feeling, relief from fatigue, lessening of numbness, return of warmth--
these could be due to increased circulation and O2 delivery. Sure, they could be placebo, too.

Dr. Dake has recently said Jeff responded to angio like the patients he'd treated for superior vena cava syndrome...more energy, relief of fatigue. Also realize that Jeff didn't know what to expect. Since no one was yet blogging or you-tubing their results, he had no idea how he'd feel. The relief of fatigue and heat intolerence were unexpected and huge. And it's coming up on 2 years, and he's mountain biking, skiing, working full days, participating in life fully. As he says, if this is placebo, I'll take it.
cheer

[Cece]

Don't forget possible improvements in the autonomic nervous system (which regulates freezing cold feet, heart rate, etc) as an immediate result of improved blood flow.

Some of this is unknown and theory/guesswork but that is ok! The blockages themselves are not guesswork, they are real and they are treatable. That's a good place to start, IMO.

[Persistent]

[/b]IF treatment of blocked veins can slow or stop the progression of disability that will be a step in the right direction since the CRABS fall short on that.

The myelin plaques that have caused scarring may not heal and therefore the fixed disability won't either but the areas of active myelin inflamation may reduce and therefore the symptoms caused by the active inflamation may well improve rapidly after the blocked veins are opened. This would be akin to the response to steroids in an attack of acute MS.

Just my thoughts.

[scorpion]

I've seen it with my own eyes and so have many others, and so has he - Dr. Dake (see his patient "Rose2"'s report).

So ... "unlikely" doesn't mean doesn't happen.

i saw your comment before it vanished

Must of been a knee slapper!