This Is MS Multiple Sclerosis Community: Knowledge & Support

Deleted for right now -

I linked to a presentation given by Dake -- this was unrelated to CCSVI -- just wanted everyone to realize that Dake does other things than look after us MS'rs. The link had a presentation error in it. No big deal --just thought I would delete until it is fixed.
Sorry Wish I could have deleted the topic but I couldn't
Sharon

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Is there something going on? If so, is it good or bad, and, either way, will we know soon?

Doesn't Dr. Dake have a paper coming out soon?

The post had nothing to do with CCSVI.

It was a presentation by Dake on other work he has been doing -- there was an error in the linked material so I deleted my post.

Sharon

Sharon,
The pharma company that wanted to meet with me after the first of the year regarding funding for CCSVI, has stepped up their timing and now wants to meet with me asap...I understand Dake has a really good CCSVI PP presentation...have you seen it or do you know if it is on line somewhere? If not, I'll go ahead and ask him for it, I just hate to take any of his time away from getting the study started, as you can imagine...

Thanks,
Lisa (aka, CNClear)

Recent inquiries to Dr. Dake get his generic e-mail response. The bottom line is that he has stopped all procedures in regard to CCSVI. Trials will not begin until well into 2010, and no expectations for further testing until well into the end of the year.

I am concerned with the sudden stop to testing by Dr. Dake and the trials of Dr. Haacke. While there is some impetus in BC, the US is really dragging its heels. Neuros and many MS centers are coming on strong with their statements that CCSVI cannot be a causitive factor in MS and their absolute refusal to study it.

We must continue to keep up the pressure to test for CCSVI. I remind all of us that Dr. Schelling was denied research into venous insufficiency. It can happen again. We must stay vigilent.

The best info we have from people that have seen him recently is that Dr. Dake is hoping to start a trial including treatments EARLY in 2010. Not sure where your info comes from.

Dake didn't suddenly stop surgeries because of some mysterious reason. He has decided to begin clinical trials. With the information he has learned from those of us who were his first patients he feels he has the knowledge to form the clinical study.
I don't like the assumptions that he had to stop. Believe those of us who have actually talked with him and stop alluding to some hidden meaning.

_________________
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Always glad to get the info from the best source. I continue to monitor progress and have high hopes trials will be prompt and positive. Magoo, my main concern is always for relief from MS. I continue to be watchful.

But then please don't post your personal thoughts as facts, qualify them with ''in my opinion" or something. If not then you will have 10 people take what you wrote as a fact, spread it themselves and all of a sudden it will come out that Dr. Dake will be developing a new procedure to correct hemorrhoids while doing ccsvi surgry in a trial he will be starting 10 years from now...

FYI Dr. Dake's generic e-mail response:

Thank you for your inquiry regarding our work on blockages of the veins of the head and neck associated with multiple sclerosis. I wish I could talk
with you personally to explain our ongoing work, but in order to provide a
reply to all, I must respond by email. After careful review at Stanford, we
have determined that the initiation of a clinical development program
leading to a possible clinical trial will be the next step as we examine the
possible risks and benefits of balloon angioplasty with or without venous
stenting for patients with multiple sclerosis. This evaluation will start
shortly but it is unlikely that, even given a highly positive outcome, we
would be initiating any clinical trial before the second half of 2010 at the
earliest. In light of these next steps, I am not currently performing the
procedure at Stanford.

Moom,
I appologize for my tone. Thank you for posting where your info came from. I guess my frustration comes from the many posts containing an alarming tone when it comes to Dake's decision to stop performing surgery.

_________________
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Thanks for the apology.
I am very careful to review my posts before submitting them.
We are all emotionally drained by the high hopes for CCSVI, and then the dashing of them with the delays in trials and testing. It's understandable. We are not each others' enemy. We are the force that will make this happen.

I still believe in watchful waiting...

Is the new generic email an update to the one sent to people who were previously told they could get the surgery? I received a different email, but it was not as recent.

Thank you for your inquiry regarding our work on blockages of the veins of the head and neck associated with multiple sclerosis. I wish I could talk personally with each person to explain our ongoing work, but in order to provide a prompt reply to all, I must respond by email. Currently, we are planning a clinical study to rigorously assess the risks and benefits of balloon angioplasty with or without venous stenting in the setting of multiple sclerosis. This controlled format for study will allow all patients to receive endovascular therapy if desired, but will provide a better evaluation of the risks, benefits and indications for different approaches to treating the vein blockages associated with multiple sclerosis.

Please be assured that we will keep your contact information on file and provide periodic updates of our progress until such time as the trial commences . At that point, we hope to be able to speak with you regarding your interest to participate in this clinical study. We anticipate embarking on the study early in 2010. I wish to extend my appreciation to you for your understanding and forbearance as we proceed with deliberate speed in our attempts to develop a multi-disciplinary, collaborative controlled study that will truly advance our understanding of the science underlying the association between venous disease and multiple sclerosis.

I hope to have the opportunity to speak with you in the future.

Sincerely,


MICHAEL D. DAKE, M.D.

we never got an update indicating that the trial/study was pushed back. Just wondering.

Andrew

As children, we all thought the game of TELEPHONE was funny...now as adults, it can be down right troublesome! But then, accurate communication is always a hurdle! We are all stressed by all of these ups and downs, so if we resist the emotionalism and stick to the facts that we know so far, it will all play itself out. In the end, most of us had no idea this possibility was even out there a month ago! Take care everyone, Brynn

_________________
41 years old, dx 1998, current EDSS 6.5