This Is MS Multiple Sclerosis Community: Knowledge & Support

Blaze, I'm with you! No one is going inside my brain for any reason. I honestly don't believe the science is anywhere near where it needs to be for IRs, let alone neurosurgeons, to be going into the sinuses inside the brain for CCSVI reasons. This really worries me. I wonder if anyone can get in touch with Dr. Arata to find out the answer?

Cece, I think you're right -- it never occurred to me that the post might have been referring to the jugulars which makes the most sense.

David, that statement is definitely worrisome. Perhaps with more skilled and experienced IRs, the rates of restenosis will be lower. Hopefully, Cece is correct.

If anyone has questions for Dr. Arata, just try e-mailing him. I had
e-mailed him late Monday afternoon and within MINUTES he replied back. He asked for my phone number so we could talk - called an hour later. He's a very caring doctor and in my opinion smart!

Hi folks,

These are my notes from the Seattle presentation, so I want to answer some of your comments.

Rokkitt, yes, he said "few exceptions" not "a few" so I'll go correct my note. He said if you were told only one side (jugular) was stenosed, you may want it rechecked too. Same goes for the azygos if you have lower body symptoms or spinal lesions and you were told it's clear.

Both Dr. Hewett and Arata said restenosis is inevitable if you wait long enough. Dr. Hewett speculated we may need retreatment every 3 years until more permanent solutions are found (and he's optimistic they will). But he said retreatment isn't a concern.

Whoever commented about stents in the sinuses was correct -- the doctors said a big no to that one.

Regarding reconstruction and bypass of veins, they acknowledged it had been attempted elsewhere and weren't happy with the results they had seen. They have consulted with vascular experts in reconstruction in the US, who have advised that this type of surgery is just not "there" yet in terms of assuring good outcomes vs. no treatment.

If you have any other questions, ask away! See the UBC Facebook site for my note on Dr. Hewett's presentation.

~Sandra

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National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

David, we ALL ARE GOING TO DIE. It's not a matter of "if" it’s a matter of "when". There is absolutely nothing disturbing about that – that’s life.

Sandra, thanks for all you have done!
Best
Arne

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"MS" doesn't exist! - CCSVI dx Nov.2009, 1. angio LVJ & RVJ June 2010, 2. angio RVJ April 2011

Thanks for the clarification Sandra. The issues in my sigmoid and transverse sinuses still worry me--especially in seeking treatment outside of Canada.

To say it's inevitable they must be talking elastic recoil, because thrombosis and intimal hyperplasia can with luck be avoided.

Sandra, thanks for the notes and for the explanation!

Sandra, thanks for the clarifications! You did a fantastic job with the notes. I'm so glad you were able to attend the Seattle presentations

Cece, I thought the following is the approximate timeline for restenosis -- comments? Thx!
1st: Recoil, from immediately to several weeks after venoplasty.
2nd: Thrombosis (clotting), from immediately (rare) to several months after venoplasty.
3rd: Intimal hyperplasia, from several weeks to one year after venoplasty.

I know strong anticoagulants can help control thrombosis, but, with the exception of complete luck, do you know any way that intimal hyperplasia can be avoided? Thx!

You know as much as I do, HappyPoet. If restenosis happens within the first few weeks, elastic recoil is a big suspect or else clotting. I think the timeline on the clotting is that immediate is quite possible, within the first few weeks is quite possible, and it's possible but less common after a few months. It would seem to depend on flow too; clotting is less likely if you have good flow and more likely if you have bad flow. We don't know for sure if strong anticoagulants are necessary, but I am for them.

Intimal hyperplasia is more of a long-term thing but not as known if it occurs in CCSVI veins, it's well understood in arteries. But one year is always listed as the end point for intimal hyperplasia, that's why if we're talking needing a venoplasty three years later, I don't think it's intimal hyperplasia.

I think healthy lifestyle and Joan's endothelial health program on ccsvi.org and specifically fish or fish oil supplements or cod liver oil, because those have been tested in mongrel dogs and were able to reduce the incidence of intimal hyperplasia, specifically when taken the week before the procedure and the week after. These are however blood thinners and would need to be cleared with a doctor. Plavix and aspirin are antiplatelets and a component of intimal hyperplasia is when the platelets adhere to the site of injury where the ballooning happened, then the platelets drop the platelet-derived growth hormone on the vein, and the smooth muscle cells are activated by this and begin growing. If you don't have platelet cells adhering, you might avoid some of that cycle, that is why antiplatelets like plavix and aspirin and cod liver oil are potentially of use. I've considered clotting a much bigger risk because of all the clotting outcomes we've heard of, when jugulars are no longer accessible and may shrivel up and die, which is a horrible thought. Another possible factor in intimal hyperplasia is if doctors are ballooning too large or at too high of pressures (what is too large? what is too small? too high, too low of pressure? We just don't know yet.). And another possible factor is if doctors are ballooning areas that don't need to be ballooned, instead of finding and focusing on the specific area of stenosis; that's where IVUS comes in, when it comes to finding where to balloon and where not to balloon.

It will be a joy to see the research come in over the next few years and maybe there will be a little more to go on when trying to figure this all out.

Cece

You have just described the protocol that the Dr is going to use on my wife (he is very conservative in his treatment):

Start Plavix 5 days before
Use IVUS to measure vein in front & in back of stenosis, then balloon to match the existing size of vein, he does not stretch the vein to a larger diameter

blood thinners & Plavix after, then baby asprin

My wife has upped her fish oil & vit D intake as well, in preperation for her procedure (Feb 23) .....

Who is talking about dying? Yes we all know we will die. But we didn't all know that we would need to re-liberated numerous times. Now we have one of the leading IR doctors saying so.

David, nobody is talking about dying it's just about common sense. Joan/cheer & Zamboni etc. are praying since nearly two years “GO LOCAL – STAY LOCAL” because of that fact! I did know (just common sense) that most likely I have to go back to my IR at least for a regularly follow up so I did stay for the angioplasty in NZ which was/is more as a challenge!!!
The same my father in law did for the last 10 years because he has 2 stents in his aorta to prevent him from another cardiac arrest. We both have a chronic vascular disease and his arteries are restenosing nearly every year! That’s normal business for him, his vascular expert/IR and now for me. There is nothing new except the IR's have to treat veins more often now.
Best
Arne

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"MS" doesn't exist! - CCSVI dx Nov.2009, 1. angio LVJ & RVJ June 2010, 2. angio RVJ April 2011

Just one of them, so far.

Dr. Sclafani mentioned that of Dr. Zamboni's original patients, some of them needed multiple angioplasties. I do not know how many that was. It may have been a small percentage, it may have been a large one? This is over a three year time frame.

http://www.thisisms.com/ftopicp-151941.html#151941

Not by a long shot!

Cece, you are an encyclopedia of all things CCSVI! Thank you very, very much!!.

When I was considering him, that was the first I'd heard of the Plavix five days before plan. I like that approach too.

Dr. Sclafani (my doctor ) is more aggressive, he stretches the vein to a larger diameter, and he's less concerned about intimal hyperplasia or else more concerned about the cumulative effect of all the blood thinners, so does not do a Plavix or aspirin course. But he was ok with me continuing with my cod liver oil supplement throughout the experience.

I also have fish thawing in the fridge right now, to be Cajuned up and enjoyed tonight.

Best wishes to your wife, bigfoot14! I remember you were waiting for your doctor to get more procedures under his belt, that was smart of you both, how exciting that the time has finally come.

When does not specify. Like in Creation, when before the sun was created there could be a very long day... (Inherit The Wind)

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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