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

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

Postby marcstck » Mon Dec 07, 2009 4:41 pm

Speaking as someone who spoke to Dr. Dake very early on, did a CT venogram and found out that I do have stenosis, was told by Dr. Dake that he recommended stenting my upper jugulars, consulted with some world-class doctors (a variety of specialists at the National Institutes of Health, among others) who warned me of the experimental nature and probable dangers of Dr. Dake's procedure, and then decided to not go through with it, I have to say that it seems to me that Dr. Dake's recent actions are entirely prudent.

To start blaming anybody who may have complained about unforeseen complications resulting from the procedure is painting a bull's-eye on the wrong target. Yes, they submitted to an experimental procedure, but apparently were not told of the number and placement of stents that were to be implanted in them during the surgery, nor of the dire possibility of stent migration.

Remember, Dr. Dake was operating in uncharted waters here, as the type and amount of stenting he was doing had never been tried before. I'm sure he was almost as shocked at the stent winding up in his patient's heart as the patient was. It was the patient, though, not Dr. Dake, that had to have his chest split open, his heart stopped, and then sliced open under emergency circumstances to save his life. Put yourself in that patient's position, might you not be a little pissed?

As others have mentioned, at this point everything is conjecture, but I'd have to imagine that Radeek's experience played a large part in the decision to cancel all surgeries, as well it should have. Until more is understood about this type of surgery, I'm sure Dr. Dake did not want to risk the lives of any more patients without having a full understanding of the effects that placing multiple stents in the CNS venous system might have.

I am at least as desperate as anyone here to find some relief, and I'm probably among the most disabled on this board. Without intervention, I fully expect to be bed ridden within 8 to 12 months, maybe sooner. I do know that the NIH is looking into the CCSVI issue, and in my particular case, trying to determine if my stenosis is relevant to my neurodegeneration, and if it is, what kind of procedure would be best to address it. My primary neurologist, a noted research scientist in his own right, is also consulting with some of the top neuro radiologists and interventional radiologists in New York City to try to figure these things out.

The consensus among all of the doctors I've spoken to about this, and I've spoken to quite a few, is that stents in the jugulars are inherently risky, and at this point a largely unknown entity. Zamboni seems to share this opinion. Remember, too, that CCSVI is still just a theory, and has by no means been proven. The evidence seems strong, but still only comes from one source. Until results can be verified by independent studies, nobody can state definitively that the theory is either valid or invalid. Unfortunately, wishing won't make it so. The CTV piece was only a report on a news magazine television show, not an objective exploration of all the issues involving CCSVI. It raised as many, if not more, questions than it answered.

I truly feel for those who were scheduled for surgery and filled with hope, only to now be stopped at the gate, and dealt some enormous frustrations. But please, try to divorce your emotions from this issue, and look at it objectively. Going out to Stanford for stenting is not a trip to the dentist to get a tooth pulled. It involved submitting to a highly experimental surgical procedure that has only been done on about 65 patients, one of whom suffered a disastrous consequence. Dr. Dake and Stanford University would have been derelict in their responsibilities if they had not pulled back and given themselves time to evaluate the situation. A clinical trial, while time-consuming and cumbersome, is probably a necessity at this point.

I only hope that whatever the solution is, it doesn't come too late for me, although at this point it seems like it probably will. I'll keep everybody updated on all the info that comes my way, as I'm trying to push the issue hard on several fronts. My tolerance for risk is high, and getting higher by the day, but I understand that I must make my choices objectively, at least as objectively as is humanly possible.

My best wishes and hopes go out to everybody. MS sucks. And I'm not even sure that what I have is MS...
Last edited by marcstck on Mon Dec 07, 2009 4:57 pm, edited 2 times in total.
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Postby creedmore » Mon Dec 07, 2009 4:43 pm

Angela will write a letter for the airlines to cover the tickets. You will have to have all of the info on the flight for her to be able to wright it.
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Postby ozarkcanoer » Mon Dec 07, 2009 4:46 pm

Marc... As usual, a very thoughtful and intelligent post. I hope with all my heart that you get the help you need as safely and as soon as possible.

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Postby EnjoyingTheRide » Mon Dec 07, 2009 4:50 pm

Nice post Marc. I agree completely.

Imagine for a minute that Dr. Dake had not gone ahead and done these 65 or so procedures already. How much would we be celebrating the fact that a leading researcher at Stanford had agreed to pull together a clinical trial for CCSVI- the first one to consider treatments outside of Zamboni's trials. We would all be dancing in the streets with joy.

I am an EDSS of 8 or so, and like Marc, progressing rapidly. I am on Dake's waiting list, and got the email a few days ago saying that he has stopped all activity until the trial.

I wish he were continuing, but I can live with this. I'm working with local doctors as well. I'm moving as quickly as I can, but with my eyes wide open.

Let's celebrate the upcoming trial at Stanford.
Mitch
Please visit my blog at www.enjoyingtheride.com
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Postby jay123 » Mon Dec 07, 2009 4:54 pm

Marc,
I have always been impressed with your articulate posts and your quest for help, but I looked at these risks, talked to a leading vascular guy here who had doubts, but still decided that since I am older (low 50's), and progressed a ton this year that it would be worth the risk.
I am signed up for a bone marrow transplant study at Duke for next summer which I believe will be much more risky than this, I was hoping not to do it.
I just think that it's time for risks, we need some pioneers to do it, and yes there will be setbacks but it would be for the co mmon good.
They will study this to death, using RR people - and it will be too late for us.
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Postby zap » Mon Dec 07, 2009 4:59 pm

I was going to be conservative in my decision (only if something clearly majorly malfunctioning found, balloon rather than stent if at all possible, no multiple stents, no loooong stents, no stents in narrow bony bendy places, etc) ... but I was still going to consider treatment, and would never have come out here if it would not be an option. I really hope they don't find something clearly defective (like Jeff) and tell me that they cannot do a thing about it ... not even try angioplasty. But I'm "borrowing trouble" worrying about what may not even happen ... we'll see!
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Postby CureIous » Mon Dec 07, 2009 5:01 pm

Thanks for the grounding Marc. Well put as usual.

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 marcstck » Mon Dec 07, 2009 5:04 pm

jay123 wrote:Marc,
I have always been impressed with your articulate posts and your quest for help, but I looked at these risks, talked to a leading vascular guy here who had doubts, but still decided that since I am older (low 50's), and progressed a ton this year that it would be worth the risk.
I am signed up for a bone marrow transplant study at Duke for next summer which I believe will be much more risky than this, I was hoping not to do it.
I just think that it's time for risks, we need some pioneers to do it, and yes there will be setbacks but it would be for the co mmon good.
They will study this to death, using RR people - and it will be too late for us.


J., I fully understand your position, as I'm almost as old as you are. My problem in assessing the risk is that we don't have enough information to go on. Right now all we can say is that 1/65 patients required emergency open-heart surgery after undergoing the stenting procedure. If that's a true reflection of the risks involved, they're quite high.

Is the bone marrow transplantation at Duke an attempt at autologous stem cell transplantation? Have you checked out the revimmune program going on at Johns Hopkins?

The clinical trial may very well indeed include only RRMS patients, but then again, it might not. The drug companies love to concentrate on relapse rates and enhancing lesions, but most neurologists understand that these are not the best benchmarks to use. 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's hard to say anything about progression rates in RRMS patients, because of the nature of their remissions...

Don't forget, this might not be the only clinical trial regarding CCSVI getting started. With all the interest that's been generated, I would imagine we'll see quite a few trials announced over the next several months...
Last edited by marcstck on Mon Dec 07, 2009 5:06 pm, edited 1 time in total.
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Postby creedmore » Mon Dec 07, 2009 5:06 pm

I never really looked at this as a cure for MS. I look at it as if I have something wrong then fix what can be fixed. Don't give me a bunch of crap that you think might work.
This is why I looked at doing this.
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Postby jay123 » Mon Dec 07, 2009 5:24 pm

Marc - yes, I did look at the Hopkins study but they (as in 99% of all studies) were only taking RR's.
I have been so motivated since I got my appt. I sent a bunch of stuff to my PT about stim therapy to get some parts moving better while waiting for what I truly believe is going to be the root cause of MS to be fixed. I wasn't expecting miracles, but I was expecting to stop progression and maybe with 18-24 months see some improvement. I spoke with two people who visited Zamboni and were so thrilled with their progress.
I have not heard from the PT for almost two weeks, I was going to call another PT tomorrow, but now - I give up.
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Postby CRHInv » Mon Dec 07, 2009 6:43 pm

Zap - Have you gotten to talk to him yet?
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Sharon » Mon Dec 07, 2009 6:53 pm

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.

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Postby ozarkcanoer » Mon Dec 07, 2009 6:58 pm

WOW, Sharon, more good news !! Everything seems to be speeding ahead !! :D :D
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Postby Rokkit » Mon Dec 07, 2009 7:17 pm

marcstck wrote:J., I fully understand your position, as I'm almost as old as you are. My problem in assessing the risk is that we don't have enough information to go on. Right now all we can say is that 1/65 patients required emergency open-heart surgery after undergoing the stenting procedure. If that's a true reflection of the risks involved, they're quite high.


Marc, have you been advised not to even get ballooned or is it just the stents that are of concern? It seems that ballooning has almost no risk. Maybe you could do that while you wait for more research to be done.
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Postby marcstck » Mon Dec 07, 2009 7:38 pm

Rokkit wrote:
marcstck wrote:J., I fully understand your position, as I'm almost as old as you are. My problem in assessing the risk is that we don't have enough information to go on. Right now all we can say is that 1/65 patients required emergency open-heart surgery after undergoing the stenting procedure. If that's a true reflection of the risks involved, they're quite high.


Marc, have you been advised not to even get ballooned or is it just the stents that are of concern? It seems that ballooning has almost no risk. Maybe you could do that while you wait for more research to be done.

I've been told that ballooning is definitely a safer option, but unfortunately the location of my stenosis is very high up in my jugular, and probably wouldn't respond to the ballooning procedure. Still waiting to hear back on the final assessments, though...
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