This Is MS Multiple Sclerosis Community: Knowledge & Support

I think we should take up a collection and buy some happy pills for Dr. Marrie, not that she can't afford them. My goodness, she seems very unhappy in these videos.

Several points.

1. I tend to agree with MechanicallyInclined about this mainly being about caution -- it's hard to be patient but there is so much more to learn. I was a lot like Dr. Cossoy when I first saw the W5 piece a few weeks ago -- I wanted to rush off to Italy, too, but mostly so I could hug Dr. Zamboni and thank him from the bottom of my heart. Over the past few days my enthusiasm has been tempered somewhat when I realize potential risks and the many unknowns. I would love to have an outcome like Magoo (Rhonda), she is my inspiration, I've all but put a picture of her on my refrigerator, and there are others also like Rose and her amazing victories... but then there are patients like Radeck and those for whom the procedure brought pain with disappointing results considering the financial, physical and emotional costs. These folks bring me back down to earth and remind me to think this through and consider more carefully the potential consequences, both positive and negative.

2. I actually thought the videos helped bring some balance. For one thing I felt that Cossoy at least tried to strike a friendly, if somewhat wary, tone. He admitted to being biased towards an immune system MS cause. He apologized for seeming "dismissive" in their voicemail message about not recommending testing outside of research studies, and he actually sounded sincere. He also admitted that relapses in the study occurred after restenosis, but that point was easily missed so bears repeating here.

However, some of the points made really irritated me. Such as:

- Part 4, Cossoy: "There was no mention of how (the MFSC) tests were administered" -- I do not believe this to be true. The study has in its appendix a thorough description of the testing protocol (i.e. timed walk, 9-hole peg test, etc.). If they had varied from this I'm sure they would have been required to mention it.

- Part 5, Cossoy made statements about RRMS vs. SPMS using stats from the first study. According to him, 83% RRMS had azygos and 1 or both IJV involvement vs. 56% SPMS with bi-jugular and no azygos involvement. He questioned what happened to the azygos involvement after patients became SPMS. But isn't it possible that all 56% of SPMS patients had bi-jugular stenoses prior to becoming SPMS? We simply don't know. Neither study disproves this possibility. How can he make such a broad assumption when he himself admits that it was a small pilot study? I'm no statistician so maybe someone smarter than me can help me out.

Bottom line, in part 6 Cossoy said that even if this procedure could arrest or slow progression, that would be considered a "great outcome." Well... that's really saying something so let's hope for at LEAST this great outcome for all of us.

Pam-Joy

Signing up to watch the link later today...

Mechanicallly Inclined,
and I agree with you, but what I find on the different threads is the despair at this procedure not being available to us--I think we have to make sure that WHENEVER the issue is raised, that this option of getting it done NOW is indeed available. This site is so widespread and scattered, that it would be hard if you went thru it now to find reference to this fact. If anyone has time, and I will also try to make time, to go thru the CCSVI subject, and tack this info onto anywhere it is NOT.

Are deposits of iron found in brains of people with MS on autopsy? Does that speak to their statement that red blood cells aren't found brain? And also, Dr C asks how this explains the differences in subtypes of MS? Doesn't the fact that Zambonie found different percentages of his various criteria in the different subtypes?

I'm so confused!
VailKin

_________________
Dxd 1994 RRMS, 2008 SPMS
Climb on!

I suppose Dr. Cossoy wanted to show a statistically significant difference in the percentage of blockages in the azygous vein between the RRMS and SPMS populations of the study. According to his understanding the percentages are 83% and 44% respectively. However, he has made a big mistake. From table 4 of the research paper one can easily see that the correct percentages for Types A + B are 83% (29/35) for RRMS and 70% (14/20) for SPMS, i.e. the difference is not significant.
Somebody was in a hurry to find problems in Zamboni's study...

PS. The comments are made in part 5.

Oops I guess I misspelled the doc's name and got the video part # wrong as well. I corrected my post.

I'm glad you took the time to check his statement. I couldn't get the PDF of the study I saved to open so was frustrated about that. Thanks!

Pam

Now that I've watched all these videos, I find the drs to be "oddly" defensive. They seem to be looking for problems in Zamboni's studies, problems with Dake, problems with our response to this news, and even problems with how the MS Society's request for studies was worded...I understand that they have so much invested in "traditional" MS theories but, jeez...

Sorry, just frustrated with the non-response to this possibility...
VailKin

_________________
Dxd 1994 RRMS, 2008 SPMS
Climb on!

I found the Dr Cassoy extremely irritating. His lame joke about wanting to go to Italy himself ("it looked so good on tv"), was just as bad the second time he used it, as it was the first time. His attitude was all "let's make fun" of the research, and that is not the kind of doctor I would want.

If I made no mistakes what Dr. Hardy said is the following:“Again getting back to the basic technique, the basic principle of doing that, we do that already, we can do it here, we have the capability of it here; the question for which patients to do this, with which balloons etc. those are all things that we will hopefully get answers for; but in principle, to be able to do a jugular vein angioplasty - I do it for other reasons already - so it’s not if we don’t know the technique we just are approaching this consciously to make sure that we are doing this for the right reasons within the right people.”
From the above I'm not sure if he meant that he has done an angioplasty in the jugular veins. It might also be that he has done angioplasty in other veins.
Maybe all he wanted was what is now provided by Dr. Zamboni, i.e. the details of the angioplasty. The details are given in the paper "A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency" (in pp. 1350-1351).

I just reviewed some of the things DR. Harding said in his comments. I noticed that he did mention that he has talked to Dr. Dake on this topic. He did also state that he would like to be part of a national trial on this issue. My thinking is that he was speaking from his interest of the vascular aspect of this as opposed to the neurologists. I've talked to one neuro and a nurse and I don't know that they are going to be directly involved with any studies. DR. Harding's statements lead me to think that he is definitly interested in this issue from a vascular standpoint. I personally think our medical system has his hands tied up untill we can see some proven trial results or at least initial trial results that show a link between MS and CCSVI. Unfortunatly we have some crappy politics involved here. The neuros have power of government for now, but I'm sure the vascular people are looking on with great interest. Once we see a link established between MS and CCSVI , look for the polls start to change.