Bad News --All Dake surgeries canceled even w/ appt.

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

Postby Algis » Wed Dec 09, 2009 7:06 pm

@muse: thanks; I found the info; will investigate.
Kaoshiung is less than an hour by speedtrain from here.
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Postby Johnson » Wed Dec 09, 2009 7:25 pm

Nice pic Johnnymac, though "nice" might not be the appropriate word in this case.
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Postby Lyon » Wed Dec 09, 2009 7:45 pm

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Postby Johnnymac » Wed Dec 09, 2009 9:11 pm

Lyon wrote:That CCSVI certainly causes MS?

That CCSVI certainly causes health issues but not necessarily MS?

That eliminating venous stenosis certainly is going to result in document able health improvements?

Or something I haven't mentioned?


I'd say at this point it proves that the true indicator of disability is Iron buildup, not the lesions in the white matter. The fact my wife only has 2 lesions on a regular MRI but has pretty advanced disability provides a personal reference to this as well. If its the iron that is the culprit, then what's causing the iron buildup? Well, the physical nature of the buildup in MS brains being identical to that in venous stenosis found in other parts of the body is very compelling evidence that points to this vein malformation/stenosis is causing iron buildup.

At this point, MS aside, I want to get my wife's veins checked out to see if they are in fact malformed/narrowed, and if they are we want to get it fixed and see what effect that has on her MS. Hopefully things will eventually prove that CCSVI is the cause of MS. To my untrained medical eye it all makes sense, more sense than anything else that I've ever seen. Perhaps I'm early in my support, but common sense is taking over the more I read and put two and two together.

I'm really more just looking at CCSVI as a separate condition on its own and needs to be checked out in all MS patients....just to be sure.
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Postby Ruthless67 » Wed Dec 09, 2009 11:15 pm

Johnnymac,

You said, Well, the physical nature of the buildup in MS brains being identical to that in venous stenosis found in other parts of the body is very compelling evidence that points to this vein malformation/stenosis is causing iron buildup.

Here are a couple of prior posts along those lines.

Cheerleader (Joan) wrote:
Zamboni asserts that the immune system is merely going in to clean up axonal death from iron deposition and hypoxic injury to gray matter...a similar response to what we see in stroke, and also what happens in chronic venous insufficiency in the legs. so...according to Dr. Zamboni's research, we see stenosis comes first, then reflux of blood into the brain (which can be exacerbated by endothelial disruption) which results in what we now call "MS."

Marcstck (Marc) wrote:
Rusty Bromely, the COO of The Myelin Repair Foundation, was open to the notion of CCSVI. Rusty had an interesting take on the matter of iron deposition, saying that he didn't think it was being deposited by the reflux of blood itself. He believed that if CCSVI was indeed responsible for the iron deposition being found in MS brains, it was because the reflux of deoxygenated blood was leading to the death of oligodendrocytes, which in turn were releasing iron into the brain. Needless to say, I was blown away by the fact that he was so well-versed in the theory that he could make that distinction.

Ruthless (Lora) wrote:
I found this information on-line and wanted to share my thoughts.

How does Multiple Sclerosis do it’s Damage? http://www.mult-sclerosis.org/howms.html

The article said “Oligodendrocyes belong to a larger grouping of maintenance cells called glial cells. Their importance has recently become better understood and, as more and more is discovered about MS, the more central oligodendrocytes, or more accurately their death, has become. In some ways, it is fair to say that multiple sclerosis is a disease of oligodendrocytes.”

So if we put the two statements together, Rusty’s & the article mentioned above, we get:

“Oligodendrocyes belong to a larger grouping of maintenance cells called glial cells. Their importance has recently become better understood and, as more and more is discovered about MS, the more central oligodendrocytes, or more accurately their death, has become, because, the reflux of deoxygenated blood in the CCSVI protocol leads to the death of oligodendrocytes, which in turn releases iron into the brain!!!!!!!!!”

I find these thoughts all go together, this is exciting info!! Am I way off base here?
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Postby frodo » Thu Dec 10, 2009 2:44 am

Algis wrote:The iron deposits in the brain surrounding areas where stenosis were found... That clearly proof the theory (without quotes) at least for me and for people who have a little logic.

Cheers :)

And besides, the real lack of proof is between the white matter lesions and the MS progression. Neurologist say that their meds reduce development of lesions. And so what? There is no proof that progression will get reduced. In fact there is evidence against that idea.

Until now it was acceptable to have meds just under a "we know no better" asumption. I think that is not acceptable anymore.
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RE: visit to Dr. Dake

Postby seeva » Thu Dec 10, 2009 8:05 am

HI Member my name is SEEVA from AUSTRALIA Please let me know DR. DAKE contact details.
REGARDS
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Postby patientx » Thu Dec 10, 2009 8:26 am

I'd say at this point it proves that the true indicator of disability is Iron buildup, not the lesions in the white matter.


I think you have to be careful here. True, white matter lesions are not a good indicator of disability. But the studies done by Haacke are far from proof that iron buildup is the true indicator of disability. The main purpose of his study was to show that his new filtering and signal processing could more sensitively detect iron in tissue. From his paper:

The amount of iron deposition could reflect the extent of tissue damage, thus iron could be used as a biomarker to predict clinical outcome. This is a reasonable hypothesis given recent findings (27), which show very clear iron deposition encircling dilated veins in MS.


And the researchers can't say definitively where the iron comes from:

The source of iron deposition may be myelin/oligodendrocyte debris (17), concentrated iron in the macrophages (that phagocytize the destructed myelin/oligodendrocyte), or the product of hemorrhages from damaged brain vessels.


Iron deposition probably will turn out to be a useful biomarker in MS. But, to my knowledge, only one study has been done to try and correlate possible iron buildup with clinical status. Much more study needs to be done before we can say there is proof.
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Postby CNClear » Thu Dec 10, 2009 2:33 pm

Reporting as one of the few who were 'turned away at the gate'...

While on my drive to the Atlanta airport to depart, Alex called to tell me my procedure had been canx...but that I should still come out and do the testing...so I did...and I'm glad I did...I found out some very useful & interesting information...

1. I like Dr. Dake very much. I trust Dr. Dake very much. We had a very open discussion...

2. He told me that it was the Neurology dept, here at Stanford, that complained to Stanford Head Administrators to have Dake stop the treatment. They said that when this CCSVI thing is found NOT to have anything to do with MS, it is going to irrevocably hurt Stanford's reputation (and so, trickling down the logic chain, cost them grants, donations and humiliation). The Neuro's here at Stanford are the reason Dake stopped the procedures. His own words were that he was "under siege"by them. They are working to convince the administration that because there has been no study, there is no proof and the attention it is receiving, is not good without proof. It is a good thing for us, that Dake's Dept. Chair believes in him & is tackling the politics (which is what he is supposed to do...and we all believe the Neuro Dept will have egg on their face while retracting some of their more immflamatory statements...although, I'm sure they will admit to no wrong doing...)

3. As far as clinical trials/studies go...they normally do take a long time to set up, however, this 'study' (different rules apply for studies, which are different than clinical trials) is almost ready to start, as Dake has been working on the protocols and he has put many stents in veins before this, just not in THESE veins. This study has been 'fast tracked'. (I know fast tracking is not uncommon.)

The people who have had their testing done and want to continue with treatment, will be able to, acoording to Dake, at the beginning of February.

And, Dake told me, I would be put in the study as one of the people who would get stents. I'm assuming there are plenty of others who would volunteer for the control group, the ones who don't get any treatment, and no one will get any 'sham surgeries.' So not to worry there. If you have your testing done and there is a problem and you WANT stenting, you will get it...another benefit of a study...

And by the way, Dake has performed 160+ of these procedures, not just 65. So we need to adjust our statements regarding complications...should be 1/160, instead of 1/65. (Don't know where the other people came from, but this info came from Dake to me. AND he has now received 750 emails just from Canadians wanting in on this trial.)

Although, the same 'category' of requirements must be addressed for this study (i.e., safety, efficacy, quality, etc) as they would with an NDA (new drug or device application) the criteria that must be met is not as rigorous because of issues such as: stents have been put in veins many times before, (not just in arteries) so there is no 'safety' issues that must be addressed, as if it were a totally new procedure...instead, a doctor, who works for the stent manufacturer, is able to 'sign off' on the fact that there is no new safety issue with that...and there are other issues here, that are working similiarly...like the stent is not a totally new device, nor is it a totally new device being used unconventionally...only the placement is what is new...this cuts down a lot of the time it would ordinarily take to set up a clinical trial, as opposed to a study of this type. Under the umbrella of a study, there will be little 'chatter' from the opposing neurologist, because it is just that...'a study' not a cure, not a treatment.

4. Radeck's most unfortunate complications did not cause the procedures to be stopped. However, Stanford's liability will be dramatically decreased by doing the procedures under the study.

5. As for my personal venous insufficiency issues...I found out that my right jugular, although appears large & unblocked, may have a valve problem, as it has a collateral vein that goes around where the valve is, and connects back into the big vein on the other side of the valve. He will do a video venography so he will be able to tell the flow and the pressure gradients. I basically do not have a left jugular (and am missing additional left side flow to the upper part of my brain that I definitely should have and Dake said he has never seen this before and so, doesn't know what the ramifications might be...) There actually is a flattened out tiny vein on the left side, that empties into what looks like 3 or 4 cul de sacs, where my jaw bone and ear intersect, but then doesn't go anywhere...he said he had not seen this particular presentation before, either, and is afraid that even with stents, I could experience restenosis, as the vein is so flat and so tiny and then just disappears. So, this little interlude will give Dake some time to figure out what to do with my left side, instead of having to 'wing it' in what would have been next day surgery.

6. Although, I will have to pay for the testing...the procedure will be covered by funding (partially, from one of the stent manufacturers, as we had speculated.) I won't be on the hook for the cost of the procedure, which was substantial. So, that's really good for me.

7. I will be having the procedure and I do believe it will not be more than 1 - 2 months out.

8. Dake never said this would cure my MS. But he did say, he was confident that at least, at the very least, it would cut down my fatigue and brain fog by 50%, cut out the heat intolerance and headaches and he 'believed' it would have an impact on many of my other symptoms, as well.

That's good enough for me...once you look at the pictures of what is actually happening (and what is not happening, that should be) inside your head, like Dake, said...whatever the impact is, because of the venous insufficiency shown here...it's not good!

So, even though I am disappointed about having to go home without my 'fix' I do have pictures that show my venous insufficiency and Dake said that he did not think I would be negatively impacted by having to wait a little longer. (If I believed it would be more than a couple of months at most, I would be more than just disappointed, but I am choosing to believe that it is going to turn out well for me.)I am sorry that I have to be stuck out here until Friday because I can't change my tickets...I would have to buy new one way tickets back to Atlanta AND would lose my frequent flier points for the round trip tickets out here...if I felt better, I wouldn't mind because I might be able to do some touristy stuff...and I might try to do something light, anyway...I am really trying not to let this get me down...

I do wonder, though, if we did do ourselves a disservice by spreading the word out to the neuro's as fast as we did, because the Stanford Neuros began getting a ton of calls and email, etc., about CCSVI and THAT is what really brought their attention to what Dake was doing...and neurology doesn't want to give up any of its 'MS domain' to the vascular guys...so they, fundamentally, threw a hissie fit and then brought up the money issue and Stanford's reputation being at stake and there you go...not good to go, anymore...And because of all the publicity in Canada, he has been beraged by so many people wanting information, wanting to be included in the study, wanting treatment...he had to stop and regroup to accomodate everyone and the Neuro's scrutiny.

But this is only a TEMPORARY setback...and Dake did say that there would soon be many hospitals wanting to do the procedure...so, even if Stanford is not cost effective for whatever reason, he believes this will be available in an area near you, sooner than later.

Whew! That's about all I know for now...thanks for listening...

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Postby bestadmom » Thu Dec 10, 2009 2:43 pm

Thank you Lisa. I've been wondering how it was going for you. Thanks for going out and doing the diagnostics. And congrats on your stenosis!? I hope you can make the best of the rest of your time in Cali.
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Postby CNClear » Thu Dec 10, 2009 2:57 pm

Thanks...and by the way, you do have the drug/stent company narrowed down correctly...since I have had to sign so many non disclosure and confidentiality agreements, I cannot either confirm or deny, at the moment...lol...

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Postby Sharon » Thu Dec 10, 2009 3:14 pm

Lisa - Thank you, thank you, thank you :) :)

Your detail of information coming from Dake is just what many people on this forum need to read. Thanks for reporting back.

Now to your stenosis -- another one of those, hmmm? cases.
I basically do not have a left jugular (and am missing additional left side flow to the upper part of my brain that I definitely should have and Dake said he has never seen this before and so, doesn't know what the ramifications might be...)

You must have quite a set of collateral veins on the left side. Like you said, Dake will now have some extra time to figure out what he is going to do with you.

Safe travels back to Atlanta.

Sharon
Last edited by Sharon on Thu Dec 10, 2009 3:16 pm, edited 1 time in total.
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Postby ozarkcanoer » Thu Dec 10, 2009 3:15 pm

CNClear... I cannot tell you how good your news from Stanford is for me and everyone else with MS. Every time I read posts from all the CCSVI pioneers I am amazed and almost dumbfounded by how positive this is. All I can say is thank you !!
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Postby jess » Thu Dec 10, 2009 3:21 pm

hay canoe i was just found out i have ms my brouther told me the have developments like ccsvi every other year is that true
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Postby Johnson » Thu Dec 10, 2009 3:30 pm

jess wrote:hay canoe i was just found out i have ms my brouther told me the have developments like ccsvi every other year is that true


Hi Jess, sorry to answer your question for ozarkcanoer, but I have had MS for 16 years, and this is the first time I have ever had any real hope. So, I would say that your brother is wrong.
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