Cece's turn

Cece · Post by **Cece** » Sun Jul 17, 2011 7:05 am

Cece wrote:

I checked the case report that he listed here and it is not written there, but in person last February he'd said that both veins had very good flow afterwards.

At the procedure this past Monday, he found stasis in the left jugular, where the contrast goes up and down but stays in the vein. It was when he was interrogating the dural sinus on that side that he saw that, upon injecting contrast, all the vertebral veins lit up, which they shouldn't have.

I am glad to know that I do not have dural sinus stenosis on either side. One less thing to worry about.

Last time the ballooning was painful, this time it was not at all. Fentanyl was used both then and now. Last time he was not doing the dural sinus check, so I hadn't had that before. It was uncomfortable but not bad.

Last time he had not gotten an image of the renal vein, this time he did. He changed how he shapes the catheter and this has helped him get into the renal vein. I think it helped him hook into the renal vein but remember no actual hooks or anything sharp involved....

Last time the entry point was through the femoral vein, this time it was through the saphenous vein, a change I absolutely support after having heard of a friend who developed a femoral vein clot after a procedure by another doctor. A femoral vein clot can possibly be life-threatening or loss-of-leg threatening although these would be rare complications. The saphenous vein is less critical if there would be any complications and the entry point is in the same area in the groin as far as I can tell. They are working on durability or how to get the results of the procedure to last ("done in one" would be ideal). Unless durabilitiy is improved, this may be a procedure that we repeat every six months or a year or that a percentage of us repeat like that. So we might as well not put the femoral vein at risk while we are looking after our jugular veins.

Cece · Post by **Cece** » Sun Jul 17, 2011 11:38 am

I wish I was at the full weekend symposium. It sounds so good. I might've been able to attend if I hadn't stretched the budget adding days beforehand so that I could have my veins relooked at. And having my left jugular reballooned (and symptom improvement to go with it) is very important, so it was the right choice but not the easiest choice now that the reports are coming in!!

Cece · Post by **Cece** » Sun Jul 17, 2011 11:43 am

At the symposium too, I was asked what's becoming a familiar question: how did you pick the name 'Cece'?

The answer is that it's from the first two letters of CCSVI. A 'C' and a 'c' make Cece.

Cece · Post by **Cece** » Sun Jul 17, 2011 3:40 pm

I do not know if I will do this justice, but this was an interesting part of Dr. Sclafani's ivus talk on Friday, and it was easy enough to find an image online similar to what he used to illustrate his points:

anyone thirsty? ;)

ok, pretend you have MS and this is your jugular. The wine glass on top would represent the healthy vein with the incoming flow, but it narrows and funnels down the stem. This is due to a bad valve, perhaps with fixed immobile leaflets as I had.

The flow gets past the bad area and it can spread back out again. And this is important: it can slosh back up the sides!! If the flow sloshes back up the sides, it can hide the stenosis. It looks healthy, there is "flow" but the flow is down the funnel in the middle and then back up the sides under the cusps of the valve.

If you needed another reason to want your IR to be using IVUS, this could be it. This is the sort of stenosis that might be found on IVUS and missed on regular flouroscopy.

And as long as we are visualizing this as a jugular vein, let's visualize a balloon being slipped into that stem and puffing it out from the inside, so that when the balloon was removed, it would look like a normal glass with no wine glass or funneling stem within it, only flow, flow, flow.

eric593 · Post by **eric593** » Sun Jul 17, 2011 5:17 pm

Cece, you are beginning to sound like you are promoting the services of the AAC doctors since they use IVUS.

In the interests of full disclosure, don't you think you should have a disclaimer at the bottom of all your posts disclosing your affiliation to AAC?

Anyone else here who is associated with an IR practice and who promotes it is considered to be "advertising", which isn't allowed. You now have a professional relationship with AAC for whom Dr. Sclafani, Dr. Snyder and Dr. Cumming work. I think you need to disclose that relationship if you are making posts promoting their practices. Otherwise, it looks like you have an agenda that you aren't disclosing, given your past working relationship with them. I think it is information that people need to know when they are considering your comments, that you have been on an AAC professional committee headed by Dr. Sclafani. Given this, you should disclose that professional affiliation and refrain from posts that promote their services. You were quite harsh to Arthur when he posted of a new clinic in Romania. "AVOID", I believe was your post. Yet now you too are promoting the practices at AAC when you have a professional affiliation with them. I don't believe you are allowed to promote them or their practices when you have a prior professional relationship with them. Conflict of interest, I think cheer would say since she is so vigilant of making sure people with an opinion on CCSVI have their professional relationships disclosed that might have coloured their opinion. Now you do too. I think you should disclose it in order to provide important context to your comments.

newlywed4ever · Post by **newlywed4ever** » Sun Jul 17, 2011 6:07 pm

eric - I believe you are incorrect in regards to Drs Cumming & Snyder working for Dr Sclafani and/or AAC. And I'm sure Cece can describe exactly what her 'professional' status is. I thought she was volunteer participant on a patient's roundtable.... I am taking some offense and I trust that is not your intent as I publicly sing the praises of Dr Sclafani & his techniques and do not feel that I'm advertising.

Cece · Post by **Cece** » Sun Jul 17, 2011 6:08 pm

Arizona Heart Institute uses IVUS.
Dr. Cumming in MN uses IVUS.
Dr. Arata has used IVUS but does not have it at the clinic.
Dr. Sclafani of AAC uses IVUS. I do not think the other AAC doctors do, does anyone know?
BNAC uses IVUS in its research.

This is not a full list.

I do not want to see everyone go to these particular doctors; I want to see the other doctors all start using IVUS. I also want to see publications on IVUS so that the interesting cases we have seen here and at conferences get into the literature where they belong.

bestadmom · Post by **bestadmom** » Sun Jul 17, 2011 6:14 pm

newlywed4ever wrote:eric - I believe you are incorrect in regards to Drs Cumming & Snyder working for Dr Sclafani and/or AAC. And I'm sure Cece can describe exactly what her 'professional' status is. I thought she was volunteer participant on a patient's roundtable.... I am taking some offense and I trust that is not your intent as I publicly sing the praises of Dr Sclafani & his techniques and do not feel that I'm advertising.

I agree 1000%. Drs Cumming and Snyder are not with AAC. Cece had input for the topics for the patient symposium as did I. All volunteer. No pay and no free rides. There are some good people involved in the Ccsvi movement, doing what we do because we believe in it and are committed to trying to help other patients. Not for financial gain.

Lyon · Post by **Lyon** » Sun Jul 17, 2011 6:17 pm

bestadmom · Post by **bestadmom** » Sun Jul 17, 2011 6:19 pm

Cece wrote:Dr. Sclafani of AAC uses IVUS. I do not think the other AAC doctors do, does anyone else know.?

The AAC doctor in fairfield,Ct does not use IVUS

eric593 · Post by **eric593** » Sun Jul 17, 2011 6:55 pm

bestadmom wrote:
newlywed4ever wrote:eric - I believe you are incorrect in regards to Drs Cumming & Snyder working for Dr Sclafani and/or AAC. And I'm sure Cece can describe exactly what her 'professional' status is. I thought she was volunteer participant on a patient's roundtable.... I am taking some offense and I trust that is not your intent as I publicly sing the praises of Dr Sclafani & his techniques and do not feel that I'm advertising.
I agree 1000%. Drs Cumming and Snyder are not with AAC. Cece had input for the topics for the patient symposium as did I. All volunteer. No pay and no free rides. There are some good people involved in the Ccsvi movement, doing what we do because we believe in it and are committed to trying to help other patients. Not for financial gain.

Thanks very much for your disclosure, bestadmom. When someone whom I know was appointed to an AAC steering committee seems to be promoting the practices of at least one of their IR's, it seems to become messy when full disclosure of the professional relationship is not readily disclosed. I may not know who is using IVUS or who is involved with AAC, but Dr. Sclafani has at least made public the appointment of you two to an AAC steering committee.

When I see someone promoting his techniques, I think the past affiliation with AAC should be disclosed, as Dr. Sclafani was upfront himself about.

I appreciate your input, bestadmom, thank you.

MrSuccess · Post by **MrSuccess** » Sun Jul 17, 2011 8:43 pm

let me point this out once again ...... everytime CCSVI takes a step forward with great news ........ the usual suspects arrive and do their utmost to create emotional turmoil.

The solution is to just let them fade ........ give no facts ..... give no response.

We now have enjoyed another successful CCSVI milestone . A 3 day symposium ...... with 100 health professionals attending !

And some of you have reached out ..... and put faces to names .

Good work everyone ........ especially Cece and Bestadmom ........

......... I couldn't be a failure .... even if I tried ...... cause you make me

Mr.Success

drsclafani · Post by **drsclafani** » Sun Jul 17, 2011 9:01 pm

eric593 wrote:Cece, you are beginning to sound like you are promoting the services of the AAC doctors since they use IVUS.

In the interests of full disclosure, don't you think you should have a disclaimer at the bottom of all your posts disclosing your affiliation to AAC?

Eric
there is no financial connection between patient volunteers who helped create an outstanding patient day at a three day symposium on ccsvi and american access care. These persons volunteered their time and energy to help develop an important educational patient centrif that was patient centric. I can assure you that these women got no gain for their efforts.

Frankly i am disappointed to read such accusations as soon as i returned from a triumphant symposium that was earnest, scientific and honest. You should better use your time caring for people instead of maligning those that do

eric593 · Post by **eric593** » Mon Jul 18, 2011 12:51 am

drsclafani wrote: Eric
there is no financial connection between patient volunteers who helped create an outstanding patient day at a three day symposium on ccsvi and american access care. These persons volunteered their time and energy to help develop an important educational patient centrif that was patient centric. I can assure you that these women got no gain for their efforts.

Frankly i am disappointed to read such accusations as soon as i returned from a triumphant symposium that was earnest, scientific and honest. You should better use your time caring for people instead of maligning those that do

It is in the best interests of forum members to know of any business affiliations that other members here may have when opinions are given, particularly if members have associations with a profit-oriented business geared to offering CCSVI treatment for PwMS. Full disclosure allows members to put any opinions given in context with potential relationships that exist. If a member has ties to a business and is offering opinions supporting that business, that is information that might affect how that opinion is considered. I'm not asking people to reject an opinion, I'm asking for full disclosure of affiliations so that PwMS have full details that might affect what weight they give an opinion in their own decision-making. We knew none of those details before you and Bestadmom provided them which helps put context to the relationship.

Sorry, I don't find asking for full disclosure of professional associations with CCSVI treatment businesses to be accusatory, I think forum members deserve full disclosure so they can weigh opinions knowing the full extent of any relationships or bias or conflict that might affect how the opinion was either formed or informed.

Advertising here after all, is not allowed, so an appearance of impropriety can sometimes be explained when full details of a perceived conflict of interest are disclosed. Being apointed to a steering committee of AAC, a business that charges MSer's for CCSVI treatments, might be information that members would want to know when reading the opinions of those that promote the doctor(s) involved with AAC.

I actually find that my position is very caring of those with MS in that it helps to ensure that MSer's are given full disclosure of relationships that might be affecting the opinions given towards certain techniques or CCSVI practices. I respect your right to feel differently, we'll just have to agree to disagree on this then.

Thekla · Post by **Thekla** » Mon Jul 18, 2011 4:56 am

I don't see any advertising like conflicts of interests here. I do see patients who have confidence in their doctors and their doctors' techniques, sharing that with those interested here. I also see some more cautious posts sometimes implying less satisfaction with some doctors. This is normal in a general forum. Patients ought to trust their doctors. It is not good to be in a position where the patient is more knowledgeable about certain aspects of their situation than their doctor. This has often happened with patients seeking a prescription for LDN, it certainly was the case for me.

I do see many patients posting very pro-ccsvi posts here that could possibly be construed as promoting an unproven 'snake oil' type remedy except for the fact that this is a ccsvi thread and we all know that this is new and not 100% validated although studies are being conducted and published. New approaches are exciting for patients and for medical professionals. We don't need to dispense with that excitement in order to be scientific.

I also think it is normal and expected for patients reporting about a conference that was sponsored by a company to name that company. They also report what individual participating doctors said. We don't need to make our posts 'fair and balanced' like is attempted in politics, when a republican president makes a speech, it must be followed by a democratic response or vice versa. If I am posting about Dr Sinan and his techniques and where he practices, I don't need to then discuss Dr McGuckin, Dr Arata and Dr Vogl to be fair. I know people who have been treated by all of them and we are all part of the experiment at this point. Who is having more successes? less complications? restenosis? durability? Who is treating which veins? What seem best this year might not seem so good next year but these discussions name names--they have to. This does equal promotion and advertising. It seems that the patients who have become more closely involved with a particular doctor are seldom paid although I know one who was scheduling for a doctor for a while. I think we ought to allow those who are interested in ccsvi to read and be excited about it here and those who are not, should simply choose a different thread. TIMS has so many to choose from. I personally, have never bothered to click on the tysabri thread--my opinion about it are not fit to print but I have no issue with those who embrace it. Personally, I want to read exciting reports from patients. I know many don't have such spectacular results but it gives me hope to know that there are people who were EDSS 7.5 or worse last year and this year are roller skating, rock climbing or gardening. It may not become my reality but I'd rather read those stories anyway.