Bad News --All Dake surgeries canceled even w/ appt.

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

Postby zap » Mon Dec 07, 2009 8:57 pm

Well ... no significant stenosis - a narrowed area in the left jugular, but high up and not very bad - Dake did not recommend treatment at this time and I agreed ...
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Postby Sharon » Mon Dec 07, 2009 9:01 pm

Thanks zap for the update. So, no significant stenosis -- this is good news for you. Will you be monitored by Dake for later follow-up?

Sharon
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Postby MS_mama » Mon Dec 07, 2009 9:05 pm

zap wrote:Well ... no significant stenosis - a narrowed area in the left jugular, but high up and not very bad - Dake did not recommend treatment at this time and I agreed ...


does he consider that to be a form of CCSVI? Or can CCSVI not be definitively diagnosed without doppler studies to assess flow? Do you feel that the fact that you have "no significant stenosis" correlates with your symptoms and current disability level?

Seems like he's being a lot more cautious and measured as far as recommending treatment.
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby Arcee » Mon Dec 07, 2009 9:08 pm

Zap, glad you got some useful information.

And my thoughts go out to those whose plans got changed. Unbelievably frustrating day. But it sounds like more options will be coming, and I hope the wait is short.
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 Johnson » Mon Dec 07, 2009 9:11 pm

Sorry zap, I am not familiar with your MS status. I wonder if, as Sharon wrote, this is good news that you don't have any significant stenosis. I ask because, I would be, um, troubled to have no explanation for my own MS - as I was before CCSVI came to light. I have regained quite a bit of hope since then.
My name is not really Johnson. MSed up since 1993
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Postby Johnnymac » Mon Dec 07, 2009 10:13 pm

Hi Zap, sorry your visit sounds like it left more questions that provided answers. I believe you mentioned in an earlier post that your level pf physical disability wasn't very bad, do you feel that played into the Dr recommendation of no procedure?
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Postby zap » Mon Dec 07, 2009 11:44 pm

Sorry I was sparse, was in a hurry (still am) - but yes I am not very bad - maybe a 3 on the scale ... no active lesions showed up, no new recent ones visible ... good news, not bad news.

I would not be surprised if there are issues that cannot be seen without doppler (they did ultrasounds but said they can't really read them in a meaningful way here in the States - because we focus on the big expensive gizmo tests here), but until I have new symptoms, I'm not going to worry about it - and then I'll have a baseline MRV on file to compare to, anyway.
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Postby Johnson » Mon Dec 07, 2009 11:47 pm

Thanks zap. I am glad that it was not too much of a disappointment for you. Hopefully, they will have this all squared away before you really, really need it. (I think they will)
My name is not really Johnson. MSed up since 1993
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Postby jay123 » Tue Dec 08, 2009 2:09 am

OK, it's 4:00 am and I still can't sleep I am so upset. I just don't understand it all. I can't believe that this has happened like it as, that Dr. Dake has been shut down. It's like for the last month I saw a future in front of me again, I was actually looking forward to something, I was even going to enjoy Xmas instead of worring about how much it was costing. Now I am back to just not carrying about anything.
I have an email in to Dr. Simka, hopefully I will hear back.
Has anyone heard of any other clinics looking at this like the stem cell clinics in Panama, China, etc.?
Zap I am happy your trip wasn't wasted.
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Postby TFau » Tue Dec 08, 2009 8:05 am

Sharon wrote:Marc wrote
If neurologists play a large role in this trial, there's a good chance that they would want to include progressive patients as a trial subset, simply because they would be the best subjects in which the track rates of progression


It is my understanding from Dr. Dake, the Stanford Neuroscience Dept will collaborate in the trial. Just to clarify about the trial - Dr. Dake has been designing and writing this trial since summer. Originally he had planned on starting it in November.

The East should see another trial -- trial will be run by a top research neurologist. I will update when more info is available to be publicized.

Sharon


Hi Sharon:

Do you know if SPMS and PPMS patients will be included in the trials?

Thanks,
Theresa
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Postby Rokkit » Tue Dec 08, 2009 9:01 am

jay123 wrote:OK, it's 4:00 am and I still can't sleep I am so upset. I just don't understand it all. I can't believe that this has happened like it as, that Dr. Dake has been shut down. It's like for the last month I saw a future in front of me again, I was actually looking forward to something, I was even going to enjoy Xmas instead of worring about how much it was costing. Now I am back to just not carrying about anything.


Man, I would feel the exact same way right now, it's terrible that it's happening this way. I would just try to keep 2 things in mind. If CCSVI is the answer, then the dam will break soon enough - there can be no stopping it. And, it's possible that a short delay will benefit you as additional risks are identified and mitigated, and procedural improvements are identified.
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Postby sou » Tue Dec 08, 2009 9:46 am

I have MS. I break a leg. Surgery is required to fix it. I must wait for the trials, just because I have MS...

I have MS. A vein gets blocked. Surgery is required to fix it. I must wait for the trials, just because I have MS...

Find the differences...

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby jay123 » Tue Dec 08, 2009 9:56 am

everyone who had the surgery should have considered it experimental, and probably have had to sign something stating that.
I wanted and accepted all risks!
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Postby Sharon » Tue Dec 08, 2009 11:19 am

Teresa -

No, I do not know the details of the trial -- I will keep you posted as I learn more. The good news is that a research neurologist has been following the CCSVI story since early last year and is interested in starting a trial. There is so much to be learned with this new paradigm -- we need trials in as many universities and MS Centers as possible....NOW!
It was exciting to see the Myelin Repair Foundation and Rusty Bromley publicly acknowledge CCSVI. I emailed the research to the MRF in May -- probably did not get much attention at that time. Now with all the press releases, with the documentary, with Haacke's protocol, Zamboni's new paper, and with patients being advocates for their MS, doctors and MS Centers are going to have to take notice.

Sharon
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Postby ScutFarkus » Tue Dec 08, 2009 12:34 pm

sou wrote:I have MS. I break a leg. Surgery is required to fix it. I must wait for the trials, just because I have MS...

I have MS. A vein gets blocked. Surgery is required to fix it. I must wait for the trials, just because I have MS...

Find the differences...


I see this sentiment expressed frequently, and I think it's important to point out that this comparison is deeply flawed.

First, if you break a leg, surgery is generally not the first line of treatment. Doctors have been successfully treating broken legs for thousands of years, so we have a tremendous amount of data about what works, what doesn't, what happens if you don't treat a broken leg, and what happens if you do. We know the long-term outcomes from various treatments, we and know the risks.

That's the opposite of the situation with CCSVI and blocked veins. To be clear, there is still no scientific proof that unblocking veins will improve MS. No clinical trials, so independently reproduced results, in fact there's not even consensus that CCSVI is plausible. Furthermore, regardless of the connection between blocked veins and MS, there is very little knowledge and experience with surgically opening these veins. To my knowledge, venous stenting is not a common procedure, even among people without MS.

You aren't being asked to wait for vein surgery because you have MS. You're being asked to wait because this surgery has demonstrated risks but unproven benefits. Doctor's don't know for sure if venous blockage is related to MS, and somewhat more importantly, they don't know how safe or effective existing surgical treatments are. Where your MS works into this is that MS is why you want the surgery. People without MS aren't having more luck getting their blocked veins opened. To my knowledge, prior to the CCSVI work, there was no known reason to proactively seek out and open blocked neck veins in otherwise asymptomatic people.

I believe Dr. Dake got ahead of the science. The surgeries he has been doing have some value for the CCSVI cause, but those same surgeries would be much more valuable if they were part of a clinical trial. The sooner a well-controlled clinical trial begins that will yield actual data, rather than anecdotes, the sooner CCSVI can be validated, accepted, and made widely available (assuming it pans out, of course). I'm hopeful that non-surgical treatments will be developed as a result. I understand the disappointment of those who had already made the decision to go forward with surgery and are now being told they have to wait, but hopefully it's some consolation to know that having their procedures as part of a clinical trial will be doing the MS community a far greater service.

/Scut
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