What's not being said?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

What's not being said?

Postby Cece » Fri Aug 05, 2011 5:07 pm

We've heard a few times from Wheelchair Kamikaze that he believes people who have poor outcomes or no improvements after CCSVI treatment are under-reporting it here because who wants to share the bad news? We want to share good news. I know of just a few people for whom this is true, where they haven't shared it publicly but things have gotten worse again.

I know it's not fun to share this stuff. I know it's awfully public. But please, whatever response you've had to treatment, it helps others to share. We get a more accurate sense of the numbers and we also get a chance to support each other. If you read this and you've had CCSVI treatment, consider posting how you're doing.
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Postby jimmylegs » Fri Aug 05, 2011 5:24 pm

the structured 'tracking project' sticky started by radeck, is an excellent venue for reporting positive and negative CCSVI results.

anonymity is easy: set up a new user profile and report your info under a name nobody will recognize.

discussion is not permitted on the tracking sticky, therefore reports of negative results will not set off anything unpleasant.

IMHO this makes the tracking thread a better option for some, as opposed to the 'post here is CCSVI did not work for you' sticky.

radeck we have not heard from you in a while... if you are reading, you are still in our thoughts.
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Postby CureOrBust » Fri Aug 05, 2011 5:30 pm

even when people post, a single post gets lost very quickly here. I have had two treatments, and minimal to no positive outcomes (as far as MS symptoms go, my ultrasound results are good now....) I am sure I have posted these facts here before, but even I cant remember where. I know if there was ever a poll on it, I would of placed a vote.

Hopefully my third procedure with Dr S goes ahead and with some better results. Either way, they will be posted here, somewhere.
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Postby CureIous » Fri Aug 05, 2011 6:19 pm

Speculation as to who is reporting and not reporting what. Not everyone that has been treated is even active on the internet, so using the internet to try to assemble data on CCSVI treatments is futile at best. We have our own microcosm here, but it is not a clearinghouse by any means.

One would think CCSVI tracking project would have more realistic numbers since it is anonymous, but any inferences from non-data speculations is just that, speculations.

We will likely never know just how many people have been treated, and what the true %'s are from 2009 to present, even if I say I know 100 people personally and reported the numbers from that, it's still a drop in the bucket.

While it's nice to postulate that "people who had neg experiences don't report it because of whatever reason", that is unprovable and more of a psychologically based guess than anything.

Not to mention the fact that there's no set method of treatment across the board, and no consistent pathology either, which would necessarily factor into any determinations of success/failure or something in the middle.

We know so much more now than 2009 and so little at the same time. The much more tends to be towards individual pieces of the puzzle and the so little would be more towards the big picture stuff. (prevalence in MS population vs. normals, what's normal what's not).

Only time and a whole lot of $$ can overcome the above hurdles...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby jimmylegs » Fri Aug 05, 2011 8:02 pm

briefly, stickies are much less likely to get buried.
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Postby formyruca » Fri Aug 05, 2011 8:02 pm

Hi Cece,

I was going to start a thread to relay my experiences and ask for some advice. I think I'll do it here since I have had a a mixed response to treatment.

My symptoms prior to my initial procedure were predominantly on my right side. My LIJV was stenosed ~70%. My RIJV was stenosed ~30%. I had both ballooned in November 2010. I did not have an immediate response, but many symptoms did fade away. About 2 months after, I started to experience new symptoms. I was scanned again in June 2011 and found that my RIJV was now worse than prior to the original procedure. It was over ballooned and now I have extensive scarring. My LIJV had restenosed as well. New Dr. proceeded to balloon the LIJV again successfully, but the right restenosed again within 30 days. My RIJV is no longer treatable with venoplasty. I will need a stent. My doctor and I are both hesitant to use a stent at this point as my MS is relatively mild.

I am also very dissapointed with my first doctor. I did not see my doc after the procedure, just the nurse. Even the next day for a follow up, I only saw the nurse. The nurse was unable to answer the questions I had related to the procedure. In addition, I was provided a cd with a couple of jpg's of the venogram. I did not receive the full imaging study. And for follow up, I called repeatedly and either did not receive a call back or the nurse was busy and could not return my call. I have yet to even speak with my initial doctor or the nurse. I wonder how this doc knows he was over ballooning without proper follow up. Fire and forget. Also, my initial doc does not do ultrasounds and I need to contact the third party to perform follow up US. I am skeptical of that as well since they were unable to find a problem using the Zamboni protocol. My guess is they would find a problem now :(

I understand I was treated when using oversized balloons was the method being utilized at the time and I accept that my doc was not the only one. I am more dissapointed with the follow up. It was substandard, IMO.

As it stands, I am afraid of having another MS attack, as my left side feels like my right did prior to my first MS exacerbation. Buzzing and twitching on my left side. My right side is doing pretty well. I know an attack is coming, I hope I can make it until some improvements in stents comes along. Perhaps once CCSVI is accepted by the mainstream, some fast tracking of soluble stents will happen. Probably wishful thinking.
I feel much more confident in my new Dr.

I have never taken any DMD's.
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Postby Cece » Fri Aug 05, 2011 11:23 pm

jimmylegs wrote:briefly, stickies are much less likely to get buried.

but the stickies are buried in stickies!
Would you be willing to thin them out, jimmylegs?
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Postby CureOrBust » Fri Aug 05, 2011 11:35 pm

Cece wrote:Would you be willing to thin them out, jimmylegs?
I would hazard a guess that jimmylegs would be hesitant for fear of cries of censorship.
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Postby Cece » Fri Aug 05, 2011 11:43 pm

formyruca,
I am really sorry to hear this is how it went for you so far.

Do you happen to know what size your RIJV and LIJV were? Was the RIJV that suffered the scarring your bigger jugular or your littler one? For me mine were different enough that if I lost my big one (149 mm) it would be a much bigger deal than if I lost my little one (60 mm). (We always talk in terms of percentage of stenosis but I realized that my 99% stenosis of my LIJV was blocking a CSA of 60 mm and my 80% stenosis of my RIJV was blocking 116 mm.)

Do you know if the scarring means the jugular is likely to have more complications or less complications if it is stented? My biggest concerns with stents have been stenting inappropriately (in an area that could have responded to venoplasty if properly sized or in an area that is not a true stenosis or with a too-small stent or even, do you remember the image that Dr. Cumming shared, of a stent that was only half-deployed so it was blocking the vein, it was pretty bad?). So my biggest concerns are stenting inappropriately or complications with the stents.

The first is obviously not the situation, this is an appropriate area for stenting (in my nonmedically educated opinion). The second concern, complications with stents, is something of most concern when patients are getting one-time faraway treatments. If you have a follow-up plan and a local IR, you are far better off than some. But of the stories we've heard of the original Dake group, who had excellent follow-up care, I've heard a lot of stories of stent complications. And also stories of clear sailing.

I can see where having mild MS would be a concern. How much flow does the vein currently carry? Is it still of some use? At this point there might be less to lose than there is to gain. A question might be, even if you have mild MS, do you have severe CCSVI?

I don't expect the dissolvable stents for many years. They are only now being tested in Europe in small sizes for arteries.

I am glad your new doc is a good one.
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Postby se1956 » Sat Aug 06, 2011 12:52 am

I think for an overview of the results this site is better (to date):
http://www.ccsvi-tracking.com/index.php
R.
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Postby dania » Sat Aug 06, 2011 9:32 am

I agree with W/Kamikaze. I have had the unfortunate experience when I have posted my negative ourcome with angioplasty, of people responding how their experience was a positive one or saying there is something with my medical history that should of predicted this. As if I am to blame.
Would we be so quick to say these type of things if someone underwent cancer treatment and it did not work for them? Would cancer survivors post saying , "well, it worked for me"?
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Postby Cece » Sat Aug 06, 2011 12:32 pm

To have had both jugulars and an azygous lost is uniquely negative. This is not at all meant as thinking you should have known; it is dissecting the situation afterwards and trying to learn for the next person. The lesson you've taken is that everyone is at risk for the outcome you've had. The lesson I've taken is that previous radiation to the neck and hypercoaguability disorders increase the risk.

Regardless, I think it's awful that it turned out so badly for you and I wish there was a way to change it.
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Postby dania » Sat Aug 06, 2011 1:26 pm

Cece wrote:To have had both jugulars and an azygous lost is uniquely negative. This is not at all meant as thinking you should have known; it is dissecting the situation afterwards and trying to learn for the next person. The lesson you've taken is that everyone is at risk for the outcome you've had. The lesson I've taken is that previous radiation to the neck and hypercoaguability disorders increase the risk.
Regardless, I think it's awful that it turned out so badly for you and I wish there was a way to change it.

There is no proof that radiation is the cause of this. That is your personal opinion and conclusion. And, the many that I have been in contact with that now have scarring, NEVER had radiation treatment. So what caused their scarring? One woman in the UK has scarring all the way down one of her jugular veins.
Many people get clots in their stents (like I did, but I did not get clots in the other 2 veins) do not have a hypercoaguability condition. What caused their clots?

I know you wish me the best and wished this never happened to me but I still find it hurtful when you post things like this about me, as if these causes are factual.
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Postby MSBOB » Sat Aug 06, 2011 2:10 pm

I think ccsvi could be controlled by the brain and that one day could be "blocked" and the next day "open". Since the brain is the most important organ, the body has all sorts of tricks it uses to protect the brain from damage. Ccsvi may just be a response to something else that the brain is experiencing. It could end up being something so simple as a response to maintain brain homeostasis, due to glucose, salt, stress, blood pressure, free radicals, or something else entirely. Why so many normal controls have ccsvi is a mystery in itself. We don't even know if it is transitory or permanent. It does seem to return for many people who have the surgery. These are big questions that I have not seen any answers for.

I wonder why the "other nuerological disease" group who showed a higher prevalence to ccsvi aren't trying to cure themselves with the surgeries? If it looks like ccsvi is a seperate phenomenon than MS, I would think it should probably be treated as such.

As far as experience tracking:
The more faith a person has in an outcome to be positive, the more likely the anacdotal evidence will be positive. That's a simple fact. People who post positive results were almost all super pumped up about getting the surgery. That's fine, but its not scientific. Since the procedure has only a few complications in the short run (outside of longterm effects unkown), the results are gauranteed to be positive, with few exceptions.
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Postby formyruca » Sat Aug 06, 2011 2:10 pm

Cece,

Thanks for your reply and asking questions. I don't know the details down to the sizes of my JV's. I should receive the full report in the mail soon. I know that my good vein(LIJV) is my dominant vein, so I hope it will help. But I think my original IR said it was my right? I'm not 100% sure I remember that correctly though. I don't know how the scarring would affect a stent in the same location. Would have to check with my Dr.

My Dr feels that further ballooning will further damage the area and wants to leave our options open for the future. There is still some flow through my RIJV and a catheter can still get through.

My Dr is not very local, but I am committed to following up and have made the 12 hour drive for my 30 day check up. My new IR is a TIMS member and the experience and care have been much better. Perhaps he will share some images from my case. I will be once I receive them.

Dania, So sorry to hear of your situation. I have never had radiation or any other real surgeries other than ACL reconstruction 15 years ago.

Does any one know if the scarring is actually an old blood clot? I was only prescribed aspirin after my first venoplasty. Perhaps a stronger anti-coagulant would have helped? Especially since the IR knew he was using larger balloons and there would be more bleeding? I don't know, just guessing.
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