Montel's announcement

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

Postby PCakes » Tue Apr 19, 2011 8:40 pm

Cece wrote:If you follow the link to the Montel facebook page, after his announcement, among a flurry of responses, there were people asking, "What is CCSVI?"


I think his research is already done. I don't think Montel's advisors would have approved this announcement without doing their homework.
I wish him the best of results. He is a father. I wish this for him and for CCSVI awareness.

I know we are a small sampling but it still surprises me to hear "what is ccsvi?"
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Postby CureIous » Wed Apr 20, 2011 7:13 pm

Johnson wrote:Just to be clear; I mean no slight to Dr. Dake, his skills, accomplishments, etc. I am well aware that there a number of members here that have nothing but good things to say about him. I do have my own doubts about stents, but they are my own, and again; as above.

There are also members here who did not have good experiences, or worse. Let us hope that Mr. Williams' experience is not so, else there will be a mighty, negative campaign against the hypothesis and procedure.

I hope that Mr. Williams has a great success, and is as pleased as Mark, Rhonda, and a host of others are after being treated by Dr. Dake. I know the joy and blessed relief that I felt, and I would wish that on anybody - especially someone with the ear of millions.


I feel no particular prediliction to defend Dr. Dake, his honor, his methods, use of stents, yadda yadda. From my dealings with him, I can say that he would not WANT anyone to do any such thing either in his stead.

That being said, this whole Montel thing from the beginning has been almost surreal, I think a goodly percentage of us, on first hearing of CCSVI, thought exactly the same thing, "wow we need to get Montel on board with this thing". His silence for so long was deafening, and while it is good that he wisely chose to measure his steps carefully, in the end, he is in my opinion, just another MS patient among many, he is a father, a Marine, a well known personality, but I feel that too much is being ascribed to him that he did not ask for, namely the sense that somehow CCSVI is going to rise or fall on what happens with him, or what he does with it, and negative or positive, the very fate of the empire hangs in the balance.

One thing I know about Dr. Dake, he couldn't care less about all this celebrity nonsense, and it is nonsense for the most part, at least as serious scientific investigations go. I feel comfortable stating that it won't hurt his feelings none if he is left in the background, steadily chugging along, fighting for US, and not having a building named after him, or getting on the news, or having 10,000 spotlights and recognition galore, all the things that make Hollyweird what it is, where celebs invariably take up causes with their umpteem millions and endless resources at their disposal, with little sacrifice or risk.

So yeah, I think he's the man for the job, should it go that far, and it may not, but if it doesn't, so be it too, I truly do wish him the best as a father, an MS patient, and all this other clamoring claptrap like he is some golden goose that MUST be bagged at all costs, smacks of petty posturing, and really just basically (to me) says, "yeah Montel, MS patient, all that's great, but if you don't mind, could we just borrow your celeb status for a time?". That's number 1.

Number 2, no, Dr. Dake aint gonna put no doggone stents inside of Montel Williams, I'd bet money on it, he's not doing it in the patients in the study, and hasn't as far as I know, done it at ALL since us 2009'ers, so no need to panic in that respect.

Number 3, Dr. Dake is well aware of IVUS and it's efficacy in diagnosing and treating CCSVI, he used it in me, and although as I've stated, was unrelated to the previous treatment, worked wonders on my venous hum, he's not a new kid on the block, and doesn't deserve to be treated as such.

Number 4, MRV's, sigh. Okay, they aren't the best thing since sliced bread, but were plenty good enough to baseline and proceed with the dozens of patients who went to Stanford in 2009, somehow now, they are practically useless, something must have changed since then? I'm sure Dr. Dake will be able to refer Montel to a facility that will also have proper US dianostics. Not sure what the problem is here, screening tools are just that, screening tools. Point is to get whatever you can get dianostically to justify a venogram, even our MRV's on a crappy 1.5T seemed to fit the bill, I'm sure Dr. Haacke will have little issue doing likewise.
Number 5, there already IS a “mighty awful negative campaign against CCSVI”, white gloving Montel is not going to change that, presupposing some imaginary disaster that may, *may* befall him, is just not enough justification in my mind to toss the baby out with the bathwater, unless you can produce a Dr. with a 100% success rate and no complications or outright failures, this is a spurious argument to make. There are negative experiences across the board, period, they are already out there, I’m positive that Montel heard about THOSE before anything else, yet here he is, knocking on the door.
Montel can afford to move himself, and his entire family , to wherever he needs to be, when he needs to be there, for as long as he needs to be there, likewise, I doubt Dr. Dake would have any problem using a facility close to Montel’s home, should things go that far.

I wish Montel the very best of success in his CCSVI journey. Leave him be for now, he’s not a stepping stone to CCSVI rise/fall, that lies in the studies, lots and lots of studies, the kind that Dr. Dake is going to undertake. The ones that get published in journals that other Dr.’s read like you and I read the newspaper to find out what’s going on. I’m positive that Montel would be flattered to find out that he is now the sole crux upon which the entire future of CCSVI pivots. :wink:
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 Cece » Sun May 01, 2011 2:31 pm

I have no patience. Any word from Montel since this initial announcement???

Would love for CCSVI treatment to make a meaningful impact in his life, as it has in mine and others, and would especially love for him to help get the word out about CCSVI by sharing his experiences.
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Postby drsclafani » Sun May 01, 2011 10:06 pm

Johnson wrote:My concern would be that Dr. Dake has historically used stents, and there have been some problems with their use; tissue growth through the stent - causing occlusion, clots, stenosis outside the stent, and goodness - migration, and if Montel Williams has a "bad experience", it's all over but for Oprah singing.

I do not follow Dake so much, and I am not sure if he is using stents so liberally still (nor if stents are really so scary), but I wonder if Doc. Sclafani, or some of the others (Hubbard, Mehta, etc.) might be better interventionists in this case.

I don't want to rain on a sunny day, but sometimes we need to be careful of what we ask for. This will bring the mainstream attention that we have been hoping for, but if it turns into a train wreck with Montel...


Not a chance. Dr Dake is first class.
his trial does not use stents btw
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Postby Cece » Thu May 12, 2011 10:26 am

UPDATE (from Montel's facebook site)
CCVSI- Part 1-Here is my update on CCVSI – I have follow up appointment after already receiving a MRI and a Venus MRI from Dr. Michael Dake at Stanford. If I receive confirmation that I am a candidate for CCVSI and decide to go through with the procedure, I will document my journey and share it with all of my friends on-line.

Tuesday at 12:21am
CCVSI-Part 2-Even though there is no documented research about CCVSI anywhere in the world, I do not invalidate the results that others have claimed. When and if I decided to follow through with this procedure, I will work closely with the medical community as a guinea pig to help validate the studies of CCVSI.

Tuesday at 12:20am
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Postby cheerleader » Thu May 12, 2011 10:34 am

umm...don't Dr. Zamboni, Zivadinov, Siskin and Simka's published papers on venoplasty count as documented research?
Still, will be interesting to see how this progresses for him---
thanks for the update, cece.
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby zinamaria » Thu May 12, 2011 11:51 am

What an egotistical and ignorant thing to say, 'I will be the guinea pig'?? Like Cheer stated, what about the documented research that have been done? And all the thousands of 'guinea pigs' that have already put themselves into the scientific pool!!??

I don't get it.
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Postby Dragonfly » Thu May 12, 2011 11:56 am

I also very curious about the idea of him being treated by Dr. Dake. I thought Dr. Dake was not allowed to treat CCSVI, outside of any trial, at this point. Has his trial begun? I haven't heard one word about it, and it's interesting that Montel would move to the "head of the line," as far as that's concerned.
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Postby Cece » Thu May 12, 2011 2:21 pm

He says "as a guinea pig" but not that he's the only one. It's good to acknowledge that it is still early days in the discovery process of CCSVI. All of us who go forward at this time are guinea pigs, pioneers; he is no different! I am glad to count Montel among our ranks. It was a surprise to me that he is being public about this. I had thought he would do it privately.

I would've agreed if he'd said 'little documented research' as opposed to 'no documented' research, but the strongest part of any sentence is what comes after the 'but....' and in this case, that's that he does not invalidate all the reports from patients who are saying, this worked for me. I liked that. I hope it works for him too. Go Montel, Go CCSVI, Go Dr. Dake! :)
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Postby CD » Thu May 12, 2011 9:07 pm

I don't know if it was posted on here before, but Clay Walker said he was going to look into CCSVI too. I think his FB page mentioned that. Maybe it is hearsay I heard from someone, I don't know for sure.
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Postby Cece » Fri May 13, 2011 8:06 am

CD, yes, there was a post on Joan's facebook page about a recent fundraiser. Clay Walker was there. He said he had been tested for CCSVI and been diagnosed him with it. Nothing about him seeking treatment but it would be a logical next step after diagnosis.
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Postby LauraV » Fri May 13, 2011 7:48 pm

What an egotistical and ignorant thing to say, 'I will be the guinea pig'?? Like Cheer stated, what about the documented research that have been done? And all the thousands of 'guinea pigs' that have already put themselves into the scientific pool!!??


Yes, Montel does seems a little full of himself, doesn't he? And where he is getting his (lack of) information about CCSVI research? I'm concerned also about his corporate ties (his show's sponsors) and his ties to the MS industry. Isn't he a paid spokesperson for Copaxone?

To me he is a big question mark for the CCSVI cause. I think he could help us or hurt us. Let's hope for the best.
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Postby PCakes » Fri May 13, 2011 8:30 pm

LauraV wrote:
What an egotistical and ignorant thing to say, 'I will be the guinea pig'?? Like Cheer stated, what about the documented research that have been done? And all the thousands of 'guinea pigs' that have already put themselves into the scientific pool!!??


Yes, Montel does seems a little full of himself, doesn't he? And where he is getting his (lack of) information about CCSVI research? I'm concerned also about his corporate ties (his show's sponsors) and his ties to the MS industry. Isn't he a paid spokesperson for Copaxone?

To me he is a big question mark for the CCSVI cause. I think he could help us or hurt us. Let's hope for the best.


Dr Michael Dake is one of his doctors. He comes highly recommended ;).. and at the end of the day, Montel Williams is a man, like many here, diagnosed with Multiple Sclerosis. I can not believe for one minute that he would pass up an opportunity to save himself, his children, their children and thousands of others.
Give him a chance.. "Judge not.."
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Postby Shannon » Sat May 14, 2011 4:14 am

What is the date of the posts from Montel? Could it be that when he posted this, CCSVI was in it's early days...back when Dr. Dake was the only one doing it? Still, there would have been documented research even then... :roll:
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Postby Cece » Sat May 14, 2011 5:17 am

His first post was last month, the other two were this past week!

Here's a quote from his foundation website:
Then in 1999, I went public with my battle against MS. Although I was warned that this disclosure could harm my career, I couldn't remain silent. I have one of the biggest mouths on this planet, and I decided to keep using it until everyone everywhere knows about MS, what can be done to fight it, and a cure is found.

www.montelms.org/MontelMS

If part of his personality is having one of the biggest mouths on the planet, and CCSVI is as life-changing for him as it has been for others, I think he will be sharing that widely. :)
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