This Is MS Multiple Sclerosis Community: Knowledge & Support

Can someone maybe clear this up?

This was posted on the MSRC message board, but as far as I knew there have been no deaths due to the vascular surgery....


Dr Michael Dake / Stanford CA

In case anyone is wondering why his surgeries were closed down here is the answer - unfortunately someone died as a result of having vascular surgery performed by Dr Dake.

squiffs.

_________________
The Multiple Sclerosis Resource Centre

Squiffy's House of Fun - Laughter for Multiple Sclerosis

This is untrue. It's been covered on this forum several times.

This is what I thought, but I thought it best to check incase something was breaking that I hadn't heard about yet, especially as this was posted on the MSRC's message forums.

Thanks,

squiffs

_________________
The Multiple Sclerosis Resource Centre

Squiffy's House of Fun - Laughter for Multiple Sclerosis

Do not accuse them so fast. Maybe there are news. Do they have a date in the report?

No, the only thing posted is as above, which made me slightly uncomfortable, as it seemed a little disingenious.......which is why I wanted to ask on here to ensure what the news really is.

_________________
The Multiple Sclerosis Resource Centre

Squiffy's House of Fun - Laughter for Multiple Sclerosis

FYI - Here is the thread about the one patient who died, explaining why her death was not attributed to the CCSVI surgery. There are several other recent threads discussing the reasons for the halt to Dr. Dake's stent surgeries. He plans to begin trials in January, however.

http://www.thisisms.com/ftopic-7886-day ... sc-30.html

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

A Google search (for what it's worth) of the web, blogs, news, gives only the tragic passing of Holly (whom I have only known of from others on this site).

edit: Holly's sister has written an e-mail in an effort to clear up incorrect information and assumptions here - [url]http://www.thisisms.com/ftopict-9321.html[.url] /edit

There are risks with anything. You can get e. coli from Jack in the Box, or salmonella from Subway, or get broad-sided at an intersection. We all have to weigh the risks and benefits. There has been one adverse event associated directly with the intervention so far. Radek has told his own story here.

There must be a couple of hundred who have had angioplasty, and/or stents now, so the known risks are about .5%, by my simplistic dead reckoning. Looking at the reported benefits, it is a risk that I will take. By the time I get there, there will have been another hundred - hopefully with an ever-diminishing complication rate, and an ever-increasing knowledge base.

_________________
My name is not really Johnson. MSed up since 1993

Thanks everyone for confirming what I thought and had already read in other threads here, but I needed to be clear on the facts. It ensures that if the poster posts anything like this again I will be able to clarify for them exactly the position.

cheers

squiffs

_________________
The Multiple Sclerosis Resource Centre

Squiffy's House of Fun - Laughter for Multiple Sclerosis

Think it's closer to 65 fyi. Btw, there's a big difference between known risks , and unknown "totally random events" like ecoli at jack in the box. In that case, Jack in the Box was held liable for negligence anyways, but it really made no difference to the person eating the burger, they got sick regardless, the presumption being that the risk itself was so minute as to no be considered when ordering a burger. However I would like to make one important note here: just because "someone" out there knows the risks (therefore making it a known risk), doesn't mean that I myself know that, unless someone tells me as such, or I find it out myself.

So I don't quite understand why there's so many different versions of pre-op discussions for risks when it comes to this procedure, and so many different versions of the aftercare instructions. I was never told to watch how I turned my neck. I mean I babied it just out of pure common sense to be sure. I'll fax anyone that wants it my aftercare instructions, there's not much there. "Physical activity as tolerated". Then 20 pages of boilerplate stuff for the meds and aspirin.

What I would have much rather seen (in hindsight), is a 100 page warning packet highlighting and delineating precisely, the known risks associated with stent placement in jugular veins and everything else associated with this surgery. That's not rocket science, sorry. It's junior varsity stuff. So hopefully the next crowd will be a bit more educated besides what's on here, which to my knowledge is not part of the admissions packet. I'm seriously concerned for the cliff jumpers who do not educate themselves first.

_________________
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

Yes, Mark, you are right about the known risks, etc. That perhaps was a bit glib of me. The point was however, that the maximum risk is death; from infection, torn vein, uncontrolled bleeding, stray stent, etc., and subsides all the way down to just a bruise at the entry site.

It gets to be a personal thing - is the risk worth it to the individual? As you suggest, I will know as much as is possible before I say "cut me, Doc." There will always be cliff-jumpers, and there are those who stop reading as soon as they see anything besides sunshine in any 100 page risks handout, or your own sage warnings, or those sage cautions of others. Some will feel that they cannot wait another year or two, and think that they have nothing to lose. I could probably go another year, or two, or 10 even, but having already lost one third of my life and potential to this, I won't. I am sure that those who have been under for 25, or 35 years feel that even more so. It will be a lot harder to consider stents, rather than just balloon for me. I don't know yet what I face.

I just figured that most people know what informed consent means.

When I suggested a number of ops done, I was counting Zamboni's angioplasties, Dake's stents, and Simka's stents and angioplasties. I think that number is getting close to 200 interventions, but I am unsure of that. I do have the fog, after all.

_________________
My name is not really Johnson. MSed up since 1993