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I can't help reading into the things you are saying cheer that you are more in favour of stents across the valves then valve removal. That is a fallacy.

Billmeik wrote:I can't help reading into the things you are saying cheer that you are more in favour of stents across the valves then valve removal. That is a fallacy.

that is absolutely not true, and I did not say, nor imply that, Bill.
I am in favor of saving working valves, if at all possible.
I am in favor of patients working with local doctors, preferably in university or hospital situations, so they can be monitored after treatment and have emergency care accessible, if necessary.
I am in favor of patients receiving followup care at regular intervals, so that they do not clot or suffer adverse affects.
I am in favor of IRB approval and published research.
I am in favor of clinical trials
I am in favor of insurance covering central venous stenosis treatment and follow up, so that patients do not have to pay out of pocket.
That's what I'm working for, through CCSVI Alliance--
http://www.ccsvi.org
And will be listening to and speaking with vascular doctors about all of this next week at the VIVA conference.
cheer

I can't help reading into the things you are saying cheer that you are more in favour of stents across the valves then valve removal.

Stents are something which we have thoroughly discussed the negatives about; valvuloplasty is something which we have not thoroughly discussed the negatives. I hear Cheer saying, in addition to the negatives on stents, here are some positives; and in addition to the positives on valvuloplasty, here are negatives. It is good to balance ourselves.

Cheer, I hope you can report back any insights from the VIVA conference. Would love to be there myself.

Hi, as someone contemplating going to Synergy in the next month to be diagnosed/treated for CCSVI, I'm very curious to know if there is any follow up knowledge on this. I've heard that valvuloplasty is a good way of treating CCSVI and it lessens the chances of re-stenosis, but this thread introduces doubts about the procedure. Since Oct 2011 has there been any more data on this (Cece? cheerleader?).

I am attempting to do my own research, but it is overwhelming, so any out there who can help would be be appreciated. Thanks.

As having been a patient of Synergy, I am sad to report that Synergy does not follow up with a phone call or email. So they cannot even say what percentage are doing well.

Welcome to the forum, ooohi. The thing that seems pertinent is that valvuloplasty is being performed by all IRs at all clinics. So all research on CCSVI is research on valvuloplasty. The ISNVD 2012 abstracts had some single center studies that were of interest.

The amount of research can be overwhelming, as can all the anecdotes. When I decided to get CCSVI venoplasty, in 2010, there was less to read than there is now. It's a tough decision, especially if self-paying, but for me I made the right choice. And my issues were the valves in both jugulars, so I had valvuloplasty done, and it was not at Synergy...

From what Cheer has said, she is in favor of saving working valves. Mine were really, really not working. But if the doctor wants to know for sure whether a valve is working or not, he can use intravascular ultrasound to get an actual look at the valves. Otherwise the flouroscopy used during the procedure just shows the veins, which shows area where flow isn't flowing, which can be seen on ivus to be a fixed, thickened valve. Dr. Cumming in Minneapolis, Dr. Ferral in Chicago, and Dr. Sclafani in Brooklyn are the three US doctors using IVUS. Dr. Cumming is originally from Canada. Synergy is an option with experience, but doesn't use ivus on every patient.

I think deciding to get CCSVI treatment is the first big decision, and deciding which provider to go with is the second big decision. Both decisions are important and will affect the outcome. There are many differences between doctors in how they do the procedure. MarkW was just talking about pulling together an FAQ of what patients could ask of the different clinics, and I can see where if we had that done up, I'd link to it now.

dania wrote:As having been a patient of Synergy, I am sad to report that Synergy does not follow up with a phone call or email. So they cannot even say what percentage are doing well.

Hello dania,
Thanks for responding. I would really like to know more about your experience if you're willing to say. Perhaps Synergy uses data from patients who initiate contact with Synergy to update them on their status, which really isn't the most accurate way of acquiring data but it would be something.

Cece wrote:Welcome to the forum, ooohi. The thing that seems pertinent is that valvuloplasty is being performed by all IRs at all clinics. So all research on CCSVI is research on valvuloplasty. The ISNVD 2012 abstracts had some single center studies that were of interest.

The amount of research can be overwhelming, as can all the anecdotes. When I decided to get CCSVI venoplasty, in 2010, there was less to read than there is now. It's a tough decision, especially if self-paying, but for me I made the right choice. And my issues were the valves in both jugulars, so I had valvuloplasty done, and it was not at Synergy...

From what Cheer has said, she is in favor of saving working valves. Mine were really, really not working. But if the doctor wants to know for sure whether a valve is working or not, he can use intravascular ultrasound to get an actual look at the valves. Otherwise the flouroscopy used during the procedure just shows the veins, which shows area where flow isn't flowing, which can be seen on ivus to be a fixed, thickened valve. Dr. Cumming in Minneapolis, Dr. Ferral in Chicago, and Dr. Sclafani in Brooklyn are the three US doctors using IVUS. Dr. Cumming is originally from Canada. Synergy is an option with experience, but doesn't use ivus on every patient.

I think deciding to get CCSVI treatment is the first big decision, and deciding which provider to go with is the second big decision. Both decisions are important and will affect the outcome. There are many differences between doctors in how they do the procedure. MarkW was just talking about pulling together an FAQ of what patients could ask of the different clinics, and I can see where if we had that done up, I'd link to it now.

Thanks for this information Cece. I appreciate your breadth of knowledge and willingness to share. I'm becoming wary of blindly having my valves "opened", and it is hard to know if "opening" those valves is a good thing across the board for people with CCSSVI, or if there are future negative ramifications for "opening" those valves which would tip the risk/reward in favour on not having them "opened". I suspect the truth is somewhere in between and dependent on the individual and sadly (because time is of essence), time and research will eventually tell. This is in my mind is the catch-22 of CCSVI. I was hoping given the number of procedures that Synergy is doing (a lot from what I've read) that there would be considerable anecdotal evidence out there of those who have been treated at Synergy who would be willing to say "I've been treated at Synergy and I'm having these complications" or "I've been treated at Synergy and its all good", and that's what I'm hoping to get from my topic "Synergy experiences" at http://www.thisisms.com/forum/chronic-c ... 19568.html. I don't know how prevalent ThisIsMS is and how many who have been treated at Synergy are actually reading these forums and willing to respond and how long it will take for them to read/respond, but I don't really know where else to try to acquire this information, so I'll give it a try to try and help me make my decisions.

If MarkW would finish that FAQ, I would probably use it.

CCSVI Locator is another good forum : http://ccsvi-ms.ning.com/

It's been said by IRs that 80% or more of the time, CCSVI is a condition of abnormal, fixed and unmoving valves that are blocking the flow. In my case, my valves weren't working and they were blocking flow, so it was a matter of weighing the certainty of major reflux and congestion with the valves in place vs the occasional and uncertain possibility of minor reflux from the heart if the valves were ballooned.

The autopsy study from Dr. Fox (a respected neurologist at the Cleveland Clinic) showed that vein wall stenosis was equally common in patients with MS and healthy controls, but intraluminal abnormalities were found almost exclusively in patients with MS. Intraluminal abnormalities means the valves and also septums, membranes, and webs.

All clinics treat the valves. There is a misunderstanding out there that only Synergy treats the valves, but it is not true.

Over a year since I went to synergy and had my faulty valves cleared away.No problems at all, although I might be wary if you asked me to stand on my head.Haven't tried it.

If fox is true and intraluminal and valvular problems are more common in ms'ers than stenosis it needs to be heard. Ccsvi is real but a lot of controversy was caused by so many people saying it was all about stenosis. More valve issues and membranes really.