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

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

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

Postby prof8 » Mon Dec 07, 2009 11:37 am

I just received a call from Alex. I was supposed to go to Stanford and have testing done Wed., Dec. 9 and then the procedure on Thurs. Dec. 10. Dake has stopped all procedures until the clinical trials begin. She said I can still come out and have testing done and consult with him but he will not be doing the procedure. She told me she is calling all the people that are scheduled to come in and relay this information. Dr. Dake called her this morning and asked her to do this.

Sorry to be the bearer of such depressing news. It is really disappointing.

However, she said that we would be on the top of the list for clinical studies next year.
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Postby zap » Mon Dec 07, 2009 11:47 am

This is not news I care to hear right now,, as I am sitting in the Vascular Clinic lab in Stanford, having spent a lot of money and most of my vacation time for the year to come out here ... wtf?

I guess it would explain why my lab work wasn't submitted, alex sounded all confused about it, and the receptionist muttered something like "hmm this shows you as Cancelled ..."

Hmmm.
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Postby ClaireParry » Mon Dec 07, 2009 11:47 am

Oh no!

My heart goes out to all of Dr Dakes patients. I'm so sorry. Did Alex say why they were stopping for the trials? :cry:
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Postby ozarkcanoer » Mon Dec 07, 2009 11:54 am

I'm so sorry, zap :( :( . It isn't fair. But I'll bet you will be on the top of the list for the Stanford clinical study !!! keep us posted.
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Postby prof8 » Mon Dec 07, 2009 12:03 pm

Sorry Zap to bring you the bad news. It really sucks. I was pretty stunned to get the call from Alex this morning. The least they could have done is let you known before you left.

Alex did not say why the procedures are canceled, only that Dr. Dake called her this morning on her cell phone and asked her to call everyone. I'm wondering if the hospital, for liability reasons, put a stop to things until the clinical trials because of some of the complications we have seen from the surgery? That would be my guess.
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Postby zap » Mon Dec 07, 2009 12:19 pm

Pretty fucked up if that applies to me too ... I talked to Alex an hour or two ago and she didn't say a word. I can't afford to fly out here again for the clinical trial. Argh. We'll see I guess, I'm having my consult with Dr Dake in a couple hours ... ?
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Postby prof8 » Mon Dec 07, 2009 12:33 pm

Good luck with the consult Zap. Let us know how it goes and I will keep my fingers crossed that perhaps Dake will do your procedure. I would tell him you can't afford to come back for the clinical trial. I guess I'm going to still go and get a consult.
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Postby creedmore » Mon Dec 07, 2009 12:47 pm

I just got off the phone with Alex and I asked if this was because of the explosion of news about all of this. She said yes it was. I don't know its a mess smells like the MS Society put a stink on this maybe.

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Postby Hoping4thebest » Mon Dec 07, 2009 12:54 pm

I really HOPE that none of our pioneers that had problems threatened malpractice suits or anything which caused Stanford to order Dake to back down...........
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Postby Johnnymac » Mon Dec 07, 2009 1:01 pm

Hoping4thebest wrote:I really HOPE that none of our pioneers that had problems threatened malpractice suits or anything which caused Stanford to order Dake to back down...........


it wouldn't take any of the individuals who have had problems to cause a shut down, the school could shut him down on their own in anticipation of liability issues.

Since there are clinical trials that will be kicking off soon the dr may have had his hand forced to move all existing consults/procedures to the trial.

I'm just speculating of course, and I really feel bad for those of you who already had your times planned and plane tickets purchased.

I recommend calling your airline or whoever you purchased tickets through and explain the situation, they may be unhelpful but you'll never know till you ask...perhaps they will offer a travel voucher for a future trip?
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Postby Hoping4thebest » Mon Dec 07, 2009 1:49 pm

This would not have been shut down with zero notice (i.e. people in the waiting room ready to go) without it being because of something major. My bet is the damn loose stent that the one guy had and his complaints that Dake didn't tell him he was even getting it. I'm not a gambling girl but I would bet on this one.

We all just lost at least a year of perhaps being cured. It will take at least that long to get a trial approved and the results studied.

The drug companies, ms society and many neuros are cheering right now, their money pit of MS will continue on for a lot longer. I should add the f%^$ing wheelchair companies too, they must be happy.

Not that I am now in an extremely depessed mood or anything. I guess it's time to start researching India, Poland, any frickin country that will give this a shot.
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Postby cheerleader » Mon Dec 07, 2009 2:01 pm

I am so sorry to everyone. Dr. Dake wanted to be able to treat those with venous malformations and reflux, since that is what he does. I'm sure he did not want this to play out in this way, and did not expect it. It sounds as though he and Alex were taken by surprise.

Other vascular doctors need to look at this paradigm. Dr. Dake is one person. When we saw him, he hoped to maybe look at "a few" MS patients and then write a paper.

The clinical trial will be under the combined auspices of the neurological dept and vascular dept....similar to Dr. Zamboni's situation of cooperation. I hope many from here will be able to be seen and treated.

It's raining in LA, a gray, heavy day. My sympathies to those who feel let down-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby bestadmom » Mon Dec 07, 2009 2:06 pm

There are 6000 interventional radiologists in the US and (according to the NMSS) around 400,000 people with MS. If we all have CCSVI, it's only 67 people for each IR to treat to fix us all. If you want to help yourself, start reaching out to every IR possible. Get their interest piqued and get tested. It's the first step.
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Postby Rokkit » Mon Dec 07, 2009 2:11 pm

I was in Dr Dake's office on Friday for my follow-up. He did say that the "pioneer" phase was coming to a close and he is working on the clinical trial. He said this will delay people some, but not more than 3 or 4 months. I agree that getting canceled while zap's in the waiting room is really weird, but I also think Dr Dake will work those who had dates on the schedule into the earliest part of the clinical trial.

Don't forget that Dr Dake is the one guy on our side right now (as far as getting the procedure done in the U.S.), so I would hope we could give him the benefit of the doubt here. He also said he had docs from all over calling him right now about doing the procedure, so maybe it won't be long before there are other options.

Honestly, I'm a little surprised people are still that hot to get this done right now after what happened to Radeck. Had I known it was possible for a stent to come loose and wind up in your heart, I don't think I would have done it. At least until more is known.
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Postby ozarkcanoer » Mon Dec 07, 2009 2:19 pm

:D Rokkit, 3 or 4 months is not that bad. I am glad there is going to be a clinical study. And thanks to all the pioneers, including you and poor Holly and poor Radek. I hope the interventional radiologist who I contacted has had a chance to talk to Dr Dake.
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