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

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

Postby jamit » Mon Dec 07, 2009 2:22 pm

It is understandable that they need to stop the surgery and concentrate on the clinical trial. I guess you have not noticed all the garbage that is flying around including here, in this very thread somebody talks about this being the cure, I mean come on, after that TV show in Canada stanford must be overloaded with people calling and asking about information endlessly, it was bad enough before.

People are really noy rational. It is a good thing that they are doing a clinical trial and evaluate how to best proceed. I for one appreciate it, and I think a dislodged stent is no minor incident and was something I certainly was not expecting and that has made me happy to wait.

Step back and take a breath, no conspiracy here just plain common sense.
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Postby Hoping4thebest » Mon Dec 07, 2009 2:31 pm

well sorry but the risks are there yes, but if nothing else works than a risk is worth it. and anyone taking this risk should have assumed all their own risks. if somebody blamed the hospital for this and caused the cancellation they should be ashamed of what they have done to all of the rest of us, especially the poor people sitting at Stanford today.
I don't blame Dake for this, he would not have canceled while people were in his waiting room.
you are dreaming if you think a study will be 3-4 months, thats bullshit. Nothing goes that quick in the medical research field.
and if the neuro department is involved, we are in double trouble, especially those with a progressive form. they won't be able to see immediate improvement, so they won't put progressives in a study you'll see.
and now the dake is going to do a study no other doctor in the us will take a chance and try is procedures now, it doesn't matter who he was talking to.
i shouldn't be near a computer right now i am so angry. my husband just called, now he's leaving work early before i throw anything (more) around the house. I need a new mouse aready--
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Postby ozarkcanoer » Mon Dec 07, 2009 2:35 pm

Hoping4thebest.... I understand exactly how you feel. You have a great husband. Keep on throwing things but maybe only throw soft things, LOL. But don't you think this is just great news ? All the clinical studies and Dr Zamboni. You have to still hope for the best.

ozark
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Postby Johnnymac » Mon Dec 07, 2009 2:43 pm

I've begun the search in Dallas. I'm emailing/calling every IR that I can find and sending info, looking for someone willing to look at the studies and imaging protocols/techniques.

When I find one willing to to help I'll gladly pass the info along.

Cheers,
John
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Postby CureIous » Mon Dec 07, 2009 2:51 pm

Keep in mind also that there are bigger politics in play behind the scenes that we are not privvy to, over and above what we can see or do know about. If it were me, sitting in the waiting room, scanned and ready, oh boy I would not be happy either, not a little bit. I'm not just sorry for all the scheduling disasters, hotels, airlines and such, but the emotional let down too. Argh. I say through clenched teeth that this is for the good, but I'm sure it doesn't feel like that right now.

Not to run "interference" here either, but keep in mind that a lot of what Alex finds out, is on par with what we know too. She's in the middle and cares for every one of us. Just wanted to make sure we remember that also....

Again, very sorry for everyone's troubles.

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 prof8 » Mon Dec 07, 2009 3:04 pm

We should be careful not to blame patients who may have reported a complication from the surgery. We don't know the specifics or if this is even true. They are not to blame for anything. Anyone who has had this procedure deserves our support. As Mark stated there are bigger forces at work here. Again, I'm betting that this was an unforeseen consequence--when Alex called me to cancel she implied that she had just found out from Dr. Dake. Anyhow, I'm supposed to fly out tomorrow, I've already got the tickets so I might as well go and get tested and consult.

My concern about trials is:
1. what if not everyone meets the requirements for the trial? (they won't take PPMS, or won't take someone who doesn't have enhancing lesions etc. etc.) Then not all of us will be able to participate.
2. Will there be a placebo effect surgery? I don't think I would participate if I knew that I might get a "fake" surgery.
3. I imagine you would have to go off all medications. Some people have wanted to stay on their meds and have the surgery (kind of a double insurance). I doubt that will be possible--how can you tell if CCSVI is having an effect if you are on meds? So I bet no meds in the study.
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Postby Hoping4thebest » Mon Dec 07, 2009 4:13 pm

It's a great idea but NO ONE in the US is going to risk it since Dake was shut down. And it's obvious he was shut down as I am sure if he had a choice and was going to voluntarily start a trial he would have at least finished this week's procedures.
If I was out there or had plane reservations I would be suing Stanford (not Dake) for my out of pocket costs.
No (sane) people will blame Alex or Dr. Dake for this, I think everyone knows it was forced on them.
Thats why I am sure it was due to the loose stent, 10:1 a lawyer called Stanford.
It just sucks! Merry f$#@%ing Xmas everyone.
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Postby Sharon » Mon Dec 07, 2009 4:15 pm

If anyone else has bought their airplane tickets to Stanford, I would suggest you put a call into Angela or Alex and ask them to write a letter to the airlines for you. Changes in flight arrangements due to medical reasons, are usually accepted by the airlines.

Sorry that some of you have to wait. Look on the bright side though.... Stanford will probably be picking up all the cost of treatment---no more 20% or 30% deductibles or copays to worry about.

Dake is excited to move on with the clinical trial. The collaboration with the Stanford Neuroscience Dept is a key element in the trial --- it is all good news.

Sharon
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Postby ozarkcanoer » Mon Dec 07, 2009 4:15 pm

Hoping4thebest... You are probably right about the lawyers, LOL.
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Postby Loobie » Mon Dec 07, 2009 4:22 pm

prof8 wrote:My concern about trials is:
1. what if not everyone meets the requirements for the trial? (they won't take PPMS, or won't take someone who doesn't have enhancing lesions etc. etc.) Then not all of us will be able to participate.


That's the biggie right there. If it's up to the neuro's, it will be based on enhacing lesions. Hell, I don't know, it may still work in that area, but to someone like me who has progressed, because I'm progressive, in the vacuum of lesions, we all know that using that as a marker leaves more than a little bit to be desired. Those of us who haven't "popped" off a lesion in a while no that the number of enhacing lesions does not correlate to disability.

This is very upsetting. Hey, they put Tysabri back on the market. Maybe this will run the same course, but Tysabri was put back due to patient outcry. We need to do the same thing here. I wouldn't imagine it's the FDA who shut him down, but I don't know any of the details so who knows?
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Postby CRHInv » Mon Dec 07, 2009 4:26 pm

This is all so upsetting. Zap, how are you and what is going on?
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 Johnnymac » Mon Dec 07, 2009 4:27 pm

Loobie wrote: in the vacuum of lesions, we all know that using that as a marker leaves more than a little bit to be desired. Those of us who haven't "popped" off a lesion in a while no that the number of enhacing lesions does not correlate to disability.


yes...its so obvious the number of lesions doesn't correlate to the level of disability I can't understand the neuros clinging on to this...hell my wife has 2 lesions and is edss of 6.5....AND neither of the two have shown active in over 3 years now with regular 6 months MRIs....yet she has continued to deteriorate slowly...
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Postby ozarkcanoer » Mon Dec 07, 2009 4:35 pm

Johnnymac.... I have 40 lesions. I walk and talk and do everything just fine. It's just my head that isn't fine :( :( . I have terrible pain in my head and my neck... and oh yes, the headaches :cry: :cry: . It is very hard to make it through every day. I don't believe in much of anything, but I believe in CCSVI... I believe that CCSVI is the key for the MS trigger.

I have 40 lesions and I'm not a zombie ??? How can that possibly be ??
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Postby zap » Mon Dec 07, 2009 4:36 pm

Right now, I'm still waiting. I went in an hour ago as scheduled, saw Angela and Alex, did a self-assessed EDS and fatigue scale test ... and was told Dake had just been called into an emergency procedure - so I'm killing two hours and going back to try again. No one said anything about anything being cancelled or anything - yet, anyway.

(In the meantime, I found out that my work is switching health insurance providers at the end of the month - and Dake will no longer be In Network.)
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Postby jay123 » Mon Dec 07, 2009 4:38 pm

I got my call from Alex this afternoon. At least I didn't make my plane reservations yet, it's funny but after that post last Friday that someone heard at Dartmouth that Dake was shut down and after reading the upset comments by Radek about not agreeing to the stents he received I just had a bad feeling.

This is bad for us with a progressive form, I agree with Loobie we will be excluded.

I have a call in to my doctor at Jacobs asking when they might have a surgical trial to start.

Wow, I can't believe how depressed I am right now. My wife is out shopping and doesn't know yet (I didn't tell her when she called and wreck her day too). I probably owe my mother a call I did kind of snap at her today when she called. Yesterday 2 people told me how they ran in to her and she told them how excited we all were about the surgery, I told her I really didn't want to get in to details with people and please don't tell others. So when she called today I said my dream is over, and thats why I didn't want you to tell anyone! and kind of hng up quick on her!

Oh well, she'll get over it or she's old enough she'll forget it soon enough - lol.

How can I do an lol though? I see a wheel chair coming for me..,, after the lousy year I have had.

Oh well, time for another Yuengling.
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