NMSS Updated CCSVI statement - alludes to Dr. Dake and Holly

[CureIous]

Times like these I wish Jeff and I had just gone to Stanford, had his treatment, gone home and gotten on with life.
But I asked Dr. Dake if he minded if I shared the information with a community of friends online...and he said fine. I sometimes wonder if we will both regret that decision. I hope not, but it's not looking so good.
In the end, I know we are only responsible for ourselves- but I don't think folks understand how upsetting this is-
later,
cheer

Let me be as audacious to say that I will never in a million years regret any of this. That decision was made before the car ever pointed up North. Mark Miller

[MamaGirl]

Times like these I wish Jeff and I had just gone to Stanford, had his treatment, gone home and gotten on with life.

But I asked Dr. Dake if he minded if I shared the information with a community of friends online...and he said fine. I sometimes wonder if we will both regret that decision. I hope not, but it's not looking so good.

In the end, I know we are only responsible for ourselves- but I don't think folks understand how upsetting this is-
later,
cheer

You are right Cheer, it must be very difficult for you and your family right now. I am so sorry for that. It is never easy to be the first few to experience something so new and have so many look to you for the answers. You have done a wonderful job here and I am basically new here but I have seen that. You have said a mouthful; in the end, we are all responsible for ourselves. Our choices. Our decisions. Your experience is just that... yours. Each will be different. For what it is worth, I think you and your husband have been more than gracious... and I thank you with my heart and pray for nothing but the best for you and all those going through similar situations. Questions or not, surgery or not, differences aside... may each one find their own peace and their own answers to some very difficult questions. GOD bless.
-MamaGirl

[marcstck]

Brainstem infarcts occur with surgery done to the arteries that feed into the brain (either due to "plaque showers" dislodged or by occlusion of the arteries) ... but I have yet to see any reason to think that endovascular work to the VEINS is associated with brainstem infarcts ... ??

True, the previous infarcts were all the result of surgery done on arteries. However, we don't have a clear picture on the changes that occur in the entire CNS vascular system when venous stenosis is addressed.

As Radeck's experience shows, stenting the lower jugular unexpectedly opened up the upper jugular, leading to the migration of the upper jugular stent. It's not too far a leap to imagine that increasing blood flow in the jugulars and/or azygous veins would have an as yet unforeseen synergistic effect on the arteries that feed those veins, placing stress on those arteries.

Conjecture, to be sure, but everything about CCSVI is thus far conjecture...

[bestadmom]

Some of the doubts cast have come up again and again, and it motivated me to consult with a family friend who is an interventional radiologist. The sticking points for me are the migration of stents, possible risk of stroke, and the "unchartered waters" of jugular stenosis and stenting.

To start, jugulars are stented quite often for those on dialysis. As time goes on, the veins become stenotic and must be repaired or the patient will die. This has been a common practice for at least 10 years. The lower jugulars have been stented, but not higher up in the cranium. It is routine and necessary.

Every doctor has his own method to determine the correct stent size. They must be within a certain range of being oversized to be sure they will not move. If there is any doubt that a venous stent would migrate into the vena cava, there is a "filter" which is placed before the vena cava which can be used to block that from happening, which can be removed later on.

As far as risk of stroke, our friend didn't feel there was a connection based on the type of stroke it was. He didn't feel that an arterial stroke would be related. It would be more likely that if a stroke happened, it would be of a different origen- from a clot breaing loose. Not being able to stop the hemmorage is due to coumadin, however.

Each one of us is different. Between our levels of disability and desperation to try anything to stop deteriorating, to our threshholds for pain and risk, to our need to examine every detail or not, before making a decision whether to pursue an interventional treatment, it is very personal, with no right or wrong.

For me, this removes some of the unsettling fears I have to some of the risks involved.

[HappyPoet]

Cheer,

You are an amazing woman who has done something truly wonderful for everyone affected by MS . . .

Q: Will the National MS Society fund research into CCSVI in MS?
A: The National MS Society is interested in funding research in CCSVI in MS. The Society welcomes research proposals from any qualified investigators whose research questions are relevant to multiple sclerosis. All proposals received are thoroughly evaluated for their relevance and excellence by our volunteer scientific peer review panels. We have invited researchers to apply for grant funding to explore this lead, and we are in discussions with the MS Society of Canada about the possibility of collaborative funding of CCSVI research. If we receive a proposal related to CCSVI that is found to be outstanding and relevant to MS, we would likely commit to fund such a study.

Yes, you are an amazing woman.

~HP

[Sharon]

Marc wrote

Conjecture, to be sure, but everything about CCSVI is thus far conjecture

Not everything about CCSVI is conjecture.....Zamboni has proven that a very high rate (almost 100%) of people with MS have venous stenoses.

Sharon

[Lyon]

.

[mrhodes40]

To start, jugulars are stented quite often for those on dialysis. As time goes on, the veins become stenotic and must be repaired or the patient will die. This has been a common practice for at least 10 years. The lower jugulars have been stented, but not higher up in the cranium. It is routine and necessary.

This is true. Any person can read pubmed and see this is true.

The higher location is not routine, but jugular stents in general are common.

Everyone who has had a relative with cancer or something where the patient had an IV going directly into their chest has seen a person who may need a stent in that vein to keep it functional because that type of IV can damage the vein. Yes, placed in a vein and yes that close to the heart. And this is enough of a problem that they have a cage type vena cava filter to catch clots or stents before they get into the heart if you need it in a particular person. As terrible as it is, it is not an unheard of complication.

There are even a papers on people stented in the next vein HIGHER than the jugulars for thrombosis the transverse sinus. These were acute situations like thrombosis of the sinus or increased intracranial pressure but these treatments appear to usually be successful.

http://linkinghub.elsevier.com/retrieve ... 3602074408

shortened url

http://jnnp.bmj.com/content/74/12/1662.abstract

I could go on.... and on.

So jugular stenting low down is routine, and stents higher than the jugular in the transverse sinus are well documented in the literature with apparently good results.

Do you really think trials are needed to place a stent in between these areas? Remember that carotid endarterectomy and stents can be done in this area as well and that is common- The carotid and jugs are in the same sheath with the accessory nerve.

Based on best ad's comment, it seems perhaps that the notion that placing a stent in this location while not common is not particularly terrifying to interventional radiologists.

Best ad did the radiologist seem nervous about the idea at all as he spoke with you? Did he caution you to not do it or anything like that?

[bestadmom]

Hi Marie,

He did not seem nervous at all about any of my concerns. But he has 30+ years of experience and did feel there's not much he hasn't seen.

Would he tell me to get the intervention, no. Would he advise against it, no. He is not an ms specialist. He said it's not his field of expertise. He can't vouch for the possibility that stenosis causes neurological damage. He could only honestly tell me what he knows.

The rest is up to me. I can say I feel more at ease with picking up the phone and calling Dr. Dake. It's good to be informed by someone who isn't biased.

Thank you for posting concurring info.

[TFau]

Times like these I wish Jeff and I had just gone to Stanford, had his treatment, gone home and gotten on with life.

But I asked Dr. Dake if he minded if I shared the information with a community of friends online...and he said fine. I sometimes wonder if we will both regret that decision. I hope not, but it's not looking so good.

In the end, I know we are only responsible for ourselves- but I don't think folks understand how upsetting this is-
later,
cheer

Oh, Cheer - the value of informing everyone of what Dr. Dake is doing by way of this forum is immeasurable.. By sharing on this medium, everyone has been able to communicate their ups and downs and other experiences. That is so helpful to guide people through the process. Even though the discussion of risk is closer to the forefront now, I can't imagine that anyone would want to go back to not knowing about CCSVI and all of the possible treatments - and the results of those that had them. You shared your story and knowledge when it would have been easier for you to just live your life - and I for one am very grateful!!!

[ozarkcanoer]

cheer.... Everyone on this board is ecstatic that you have lead the way with CCSVI. When Jeff had the procedure, you could have just stopped right there. But you didn't. I'm so sorry that there are people who just don't understand what this means for people with MS. We ALL know what this means and you have been our cheerleader all the way. Thank you from the bottom of my heart.

[Inge67]

cheer.... Everyone on this board is ecstatic that you have lead the way with CCSVI. When Jeff had the procedure, you could have just stopped right there. But you didn't. I'm so sorry that there are people who just don't understand what this means for people with MS. We ALL know what this means and you have been our cheerleader all the way. Thank you from the bottom of my heart.

Hear Hear!
Words can not express how gratefull I am to stumble upon this forum and read all your (well thought over) posts. I have been hooked since September and still learning!
Thanks for all your time and effort Cheer. Please ignore all the negativity and comfort yourself with the love and appreciation of all of us that understand what you did.

Inge

[ozarkcanoer]

Lyon... I guess by your definition I am a Hari Krishna. Watch me hand out leaflets at the airport .

I suppose you are one of those people who still think the world is flat and is only 6000 years old. Skepticism just for the sake of skepticism is meaningless.

I for one have been criticized for my skepticism many times. No one ever said people aren't going to be damaged or die from any kind of surgery. No one ever said go to Costa Rica or Israel and get stem cells, that'll fix you up !! No one ever said take this Tysabri. It's OKed by the FDA so it is "safe". Sometimes people get tired of scientific and medical paternalism. Sometimes someone who works in a patent office is spot on !! And Dr Zamboni is a doctor AND a scientist. Sometimes people connecting with people on the internet are not nutcases and Hari Krishnas, but are people who understand science and the politics of science.

I worked at a university laboratory for 2 years and got paid by the NIH for doing not much of anything because the "scientists" I was working with didn't know WHAT TO DO.

[ozarkcanoer]

Pardon my previous rant. I am fatigued, I have a splitting headache and I have MS.

[bestadmom]

Hi OC,

I liked your rant. No need to apologize. Bob's comment was rude and uncalled for.