Too Early to Promote CCSVI

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

Postby jr5646 » Fri Dec 04, 2009 7:43 am

I'd just like to add that although new, the procedure "IS" covered by insurance, so it's not really considered experimental. I alone could save my carrier thousands if I can dump TYSABRI...
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Postby Johnnymac » Fri Dec 04, 2009 7:54 am

jr5646 wrote:I'd just like to add that although new, the procedure "IS" covered by insurance, so it's not really considered experimental. I alone could save my carrier thousands if I can dump TYSABRI...


Thats a pretty important point to make. Insurance companies should be all for this, and I would hope may contribute some of their own dollars for research as it would greatly benefit them to not be shelling out 3k a month for Tysabri (my bill actually says $6800 a month, but a the 'negotiated' price with discounts is right under 3k)...combined with the baclofen, desmopressin (sp?), 4ap, xanax and various pain meds the amount of money my insurance is shelling out every month for my wife's treatments/meds is insane.
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Postby prof8 » Fri Dec 04, 2009 8:48 am

jr5646 wrote:
If all you want is tested, why don't you just enroll in the Buffalo study and let me go to Stanford in your place :D I'll be more than happy to step up to the plate !!!!!!! I totally agree with Sharon..


Again it would be nice if everyone respected the choices we make or CONSIDER. I can't just fly off to Buffalo--it's blinded which gives me nothing!!! This is exactly the kind of comment which makes me reticent to post my experience at Stanford on the forum regardless of which personal medical choices I make. I just find this rude although I understand. There exists a quiet desperation in a lot of MS patients and hope doesn't come easily.

But listen, I did my due diligence. I have been following this since the summer. I submitted my materials to Alex and spoke to Dr. Dake in very early August. I could have gone then but couldn't afford to leave work and recover until Dec (hence my late appointment at the tail end). Just be happy for me as another patient who got an appointment with Dr. Dake and don't obliquely critique my plans (which could always change) by offering to go in my place since you think I'm taking someone elses place who is more worthy.
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Postby mohzi » Fri Dec 04, 2009 9:18 am

I had it done at a hospital in North East Texas. It was done about 3 and half years ago and clearly says, "no stenosis." I think I probably have stenosis, but this person is or was not trained in CCSVI.
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Postby TFau » Fri Dec 04, 2009 9:20 am

I don't really get where the animosity on this board comes from. Everyone here is a stakeholder and hopes that treatment of CCSVI provides benefits for MS patients in the long term. Some are going to wait for the larger, blinded trials, and some want to be treated earlier. As long as the procedure is as safe as possible, it seems logical, based on Zamboni's work and the anecdotal reports from people who have been treated, to try to have the procedure done. As long as they are realistic about the possible benefits, many patients don't have anything to lose.

Hopefully the trials will validate that treating CCSVI is beneficial for MS patients. But unless there are holes in Zamboni's work that cast serious doubts on the credibility of his results, I don't think anyone can deny that the work looks very promising. The biggest drawbacks are the sample size and the fact that the study was unblinded. These aren't holes, they are variables to be considered. But even considering these variables, the results are promising.

If Zamboni worked for big pharma as a research scientist, and presented these results to the scientific advisory board as a possible new product avenue (replace "liberation procedure" with "drug"), there would be a significant amount of the R&D budget put towards this with a high expectation of success. Once word got out about the results, share prices would go up even before a clinical trial.

I guess my point is that you can be objective, weigh the evidence, consider the risks, and still be excited about the work and getting the procedure! I think people who give off the vibe that it's silly and unintelligent to get your hopes up until further research is done may be hiding some red robes and tiny bells in their closet...
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Postby jay123 » Fri Dec 04, 2009 9:39 am

Mohzi, (to the best of my knowledge) the doppler test that Zamboni developed is technically very unique, in order to do it properly takes a lot of training and practice. Chances are the doppler you had isn't even close to what he has developed. I know he came to Buffalo and taught them how to perform it.
Normal dopplers will not show what his method does show.
Hopefully the technique will be taught to all operators at some point as it is so much cheaper to get done than an MRI.
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Postby chrishasms » Fri Dec 04, 2009 9:58 am

123
Last edited by chrishasms on Sat Dec 05, 2009 1:00 pm, edited 1 time in total.
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Postby CureIous » Fri Dec 04, 2009 11:45 am

jay123 wrote:Mohzi, (to the best of my knowledge) the doppler test that Zamboni developed is technically very unique, in order to do it properly takes a lot of training and practice. Chances are the doppler you had isn't even close to what he has developed. I know he came to Buffalo and taught them how to perform it.
Normal dopplers will not show what his method does show.
Hopefully the technique will be taught to all operators at some point as it is so much cheaper to get done than an MRI.


This is a critical point I am making to the newbies I speak with in private, not to dissuade, nor to persuade from doing or not doing anything, but to understand the gravity of either false positives, and indeed the let down associated with false negatives. This will take time to disseminate into the radiology culture at large, but from reports that I am hearing about, they are also excited to get on board. Per the study that I posted on here, there is a VAST amount of training still needed in the UT world, just to perform normal and accepted scans of arteries, heck even of pregnacies, by trained professionals with much experience!

Let alone a brand new paradigm looking for reflux in veins, which is extremely difficult, but not impossible to detect. These things take many years (normally) to filter down into the field at large, and even then it's case by case, operator dependent.

But it does provide much hope, in that UT, being a safe, non-invasive test, easily performed in a lab or doctors office, is something that once learned properly, can be performed rapidly and on great numbers in the shortest amount of time. It is going to be very difficult to persuade a vast majority of the medical field to do expensive MRI/MRV's on a fishing expedition, but UT's are far cheaper and frankly, will show reflux, whereas MRV's will not.

Hang in there, new day coming, just not fast enough!

Mark.
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 MS_mama » Fri Dec 04, 2009 12:16 pm

Look, it's not about promoting this research because people have drunk the Zamboni kool-aid or whatever--it's about getting answers, making sure the doors are open for further studies.

If you read the posts, most (if not all) who had surgery are pretty cautious as far as promoting people to get the treatment. Marie wrote a really good post on this recently, saying that for people early in the disease, the optimal surgery is years away.

What I understand that we are doing here is promoting advocacy to further this research. Reality check: there's no big company pushing the research through, so unless patients make a lot of noise and can convince people to run studies, we won't find out if this treatment can really help us.

THAT is what this advocacy and promoting of Zamboni's research is all about. Getting the research moving forward. Score one on our part now that the MS societies want to fund the research. Let's let everyone know that we want answers, we want research.

And as for the issue of giving people false hope, well, we are all adults, I think any rational adult will do their research before jumping into any treatment with eyes shut.

Any new treatment can't be developed unless a few brave souls are willing to be guinea pigs, so kudos to those who are willing to take the known and unknown risks so the rest of us sorry critics can find out if this line of treatment will work or not.

It's a little bit more complicated than just saying "it's too early to promote CCSVI."
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby jr5646 » Fri Dec 04, 2009 12:45 pm

prof8 wrote:
jr5646 wrote:
If all you want is tested, why don't you just enroll in the Buffalo study and let me go to Stanford in your place :D I'll be more than happy to step up to the plate !!!!!!! I totally agree with Sharon..


Again it would be nice if everyone respected the choices we make or CONSIDER. I can't just fly off to Buffalo--it's blinded which gives me nothing!!! This is exactly the kind of comment which makes me reticent to post my experience at Stanford on the forum regardless of which personal medical choices I make. I just find this rude although I understand. There exists a quiet desperation in a lot of MS patients and hope doesn't come easily.

But listen, I did my due diligence. I have been following this since the summer. I submitted my materials to Alex and spoke to Dr. Dake in very early August. I could have gone then but couldn't afford to leave work and recover until Dec (hence my late appointment at the tail end). Just be happy for me as another patient who got an appointment with Dr. Dake and don't obliquely critique my plans (which could always change) by offering to go in my place since you think I'm taking someone elses place who is more worthy.


Lighten up man... It was only a joke (hence the :D ) Maybe the emotional liability is getting the best of you?? Come on... Really.... Seriously, what good is it to know if you have stenosis if you're not going to repair it though??? Nor do I quite understand what benefit it would be waiting for the Buffalo study to conclude. I have to say though, that I commend the folks that join any study... they help us all in the long run.

Me personally though, I can't afford to loose any more function.. it trumps any side effect and or risks of any procedure PERIOD. I'll mortgage my house to pay for this, or any other promising treatment if I have to. I don't want to wait, because of the high probablity of permanent damage occurring - without the ability for repair. The way I see it, is it's taken 10, 20, some even 30 years worth of CNS damage and to entertain the thought that ccsvi will repair this over night is foolish. I've always said from the beginning, that if I could just stop progressing, I'd gladly take it... Zamboni's research suggests just this...

I've been on Tysabri since 10-2007, and knew the risks going in.. I always told myself that it was a stop gap measure until something better came along.. to me ccsvi is it... and trust me, I've looked hard at most if not kept my eye on all of them.. almost went to Johns Hopkins with Chris, right before that I submitted my info. for the tovaxin studybut opted for tysabri instead, tried LDN, messed with supplements, diet, numerous med.s for sysptom control... blah, blah, blah..

Hey, even if things don't work out with ccsvi, at the end of the day, I can at least say that I've done everything humanly possible to try... I owe it to my wife and children, to say the least. I guess maybe I lost hope recently, and ccsvi has brought it back... and oh what a wonderful thing thing it is... we need to especially thank Joan/Cheerleader and Jeff for that.. as well as Zamboni and team and of course all of you who have contributed your experiences... truly a beautiful thing in and of itself. (maybe the emotional liability is getting the best of me too)

I'm sorry if I offended you in anyway, that was not my intention at all... I can only wish you the best, and hope you find relief. I "am" truly happy for you !!!
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Postby Arcee » Fri Dec 04, 2009 1:08 pm

If you read the posts, most (if not all) who had surgery are pretty cautious as far as promoting people to get the treatment. Marie wrote a really good post on this recently, saying that for people early in the disease, the optimal surgery is years away.


I just want to point out that what most of us are saying is that it is a decision for each individual to make. No one knows what the course of any given individual's disease is going to be. No one knows what the course of CCSVI treatment availability and efficacy is going to be. Also, by definition, the optimal surgery is years away for everyone as the techniques will be modified.

So some people may decide that given their situation and given their assessment of the risks, that they may want to act sooner rather than later while others will feel more comfortable waiting. But getting the research moving forward should be of interest and value to everyone.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby jamit » Fri Dec 04, 2009 1:28 pm

I just want to say that Stanford is not open for business anymore. I have been waiting for the phone call from Dake for a couple of months and also got the email that they will not take more patients for now and that I can enroll in the clinical trial.

The stent dislodging and racing to the heart causing open heart surgery and the other problems with stenting certainly made me hesitant and I welcome the clinical trial. I suspect that is probably part of the reason Stanford is not taking more patients. Standford was out of control anyhow, I mean not answering emails and returning calls only if one bombards them really does not work for me anyhow.

Having no progression in 18 months by the way does not show anything unless in a clinical trial setting, I have had zero progression on many occasions much longer than that without being on any drugs during my tons of years with MS.

I will certainly participate in the clinical trial if I qualify and hopefully they will come up with better stents, protocols and procedures.
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Postby Lyon » Fri Dec 04, 2009 1:58 pm

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Postby CureIous » Fri Dec 04, 2009 2:10 pm

[quote="Lyon"]

You know, people made fun of my chin my entire life, until I saw Jay Leno doing standup at his old haunt there in Hermosa Beach, people thought I was his son, so on his exiting the stage, he stopped by our table and told me I have a nice chin while he grabbed his... .
Image
Image

Sticks and stones and all that! haha
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Postby Lyon » Fri Dec 04, 2009 2:14 pm

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