This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Wed May 22, 2013 6:42 am


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 229 posts ]  Go to page Previous  1, 2, 3, 4, 5 ... 16  Next
Author Message
 Post subject:
PostPosted: Tue Apr 19, 2011 9:40 pm 
Offline
Family Elder
User avatar

Joined: Sun Dec 13, 2009 4:00 pm
Posts: 849
Location: Canada
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?"


Top
 Profile  
 
 Post subject:
PostPosted: Wed Apr 20, 2011 8:13 pm 
Offline
Family Elder
User avatar

Joined: Tue Jul 14, 2009 3:00 pm
Posts: 1155
Location: Riverside, CA
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


Top
 Profile  
 
 Post subject:
PostPosted: Sun May 01, 2011 3:31 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8506
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.


Top
 Profile  
 
 Post subject:
PostPosted: Sun May 01, 2011 11:06 pm 
Offline
Family Elder
User avatar

Joined: Fri Mar 12, 2010 4:00 pm
Posts: 2985
Location: Brooklyn, New York
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


Top
 Profile  
 
 Post subject:
PostPosted: Thu May 12, 2011 11:26 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8506
UPDATE (from Montel's facebook site)
Quote:
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
Quote:
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


Top
 Profile  
 
 Post subject:
PostPosted: Thu May 12, 2011 11:34 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4676
Location: southern California
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.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


Top
 Profile  
 
 Post subject: montel
PostPosted: Thu May 12, 2011 12:51 pm 
Offline
Family Elder
User avatar

Joined: Fri Dec 04, 2009 4:00 pm
Posts: 296
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.


Top
 Profile  
 
 Post subject:
PostPosted: Thu May 12, 2011 12:56 pm 
Offline
Getting to Know You...
User avatar

Joined: Wed Sep 30, 2009 3:00 pm
Posts: 13
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.


Top
 Profile  
 
 Post subject:
PostPosted: Thu May 12, 2011 3:21 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8506
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! :)


Top
 Profile  
 
 Post subject:
PostPosted: Thu May 12, 2011 10:07 pm 
Offline
Family Elder
User avatar

Joined: Sun Dec 19, 2010 4:00 pm
Posts: 216
Location: USA
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.
CD

_________________
Where there is a will, there is a way. "HOPE"

CCSVI Procedure December 2010


Top
 Profile  
 
 Post subject:
PostPosted: Fri May 13, 2011 9:06 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8506
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.


Top
 Profile  
 
 Post subject:
PostPosted: Fri May 13, 2011 8:48 pm 
Offline
Family Member
User avatar

Joined: Mon Jun 14, 2010 3:00 pm
Posts: 65
Location: NY
Quote:
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.


Top
 Profile  
 
 Post subject:
PostPosted: Fri May 13, 2011 9:30 pm 
Offline
Family Elder
User avatar

Joined: Sun Dec 13, 2009 4:00 pm
Posts: 849
Location: Canada
LauraV wrote:
Quote:
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.."


Top
 Profile  
 
 Post subject:
PostPosted: Sat May 14, 2011 5:14 am 
Offline
Family Elder

Joined: Mon Sep 28, 2009 3:00 pm
Posts: 148
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:


Top
 Profile  
 
 Post subject:
PostPosted: Sat May 14, 2011 6:17 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8506
His first post was last month, the other two were this past week!

Here's a quote from his foundation website:
Quote:
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. :)


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 229 posts ]  Go to page Previous  1, 2, 3, 4, 5 ... 16  Next

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Montel's Announcement on Dr Oz

dania

1

739

Tue Nov 01, 2011 1:10 pm

ErikaSlovakia View the latest post

There are no new unread posts for this topic. CBC announcement

Greenfields

6

1446

Fri Mar 05, 2010 12:17 pm

thisisalex View the latest post

There are no new unread posts for this topic. ms-mri website announcement

elliberato

1

836

Thu Aug 12, 2010 3:26 pm

ljh View the latest post

There are no new unread posts for this topic. Announcement- CCSVI Alliance

[ Go to pageGo to page: 1, 2, 3, 4 ]

cheerleader

45

10328

Sun Apr 18, 2010 6:10 pm

Rose2 View the latest post

There are no new unread posts for this topic. Bridget Wehmeyer: Sad Announcement

mangio

11

1936

Wed Jun 02, 2010 4:13 am

belsadie View the latest post

 


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: