This Is MS Multiple Sclerosis Community: Knowledge & Support

This is an e-mail I received today, 12/3/09 from Darcey. I guess if you already have an appointment with Dr. Dake, you have are the holder of “The Golden Ticket”. I spoke with Darcey personally and she said that the rest of us will have to wait on the clinical study and if you already have your paperwork in you will get a call when the study is closer.

Dear Lora,

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.

Wow! Well, I guess I am on the waiting list for the clinical study then too now. I think it is definately for the best, with what we know, but it's still hard to sit and wait for the relief that will be ours someday. Thank you for letting us know. I wonder if I will be getting an e-mail, too?

Hi Shannon,

I have to admit I had a slight "pity Party" after I hung up the phone from talking with Darcey. Even shed a tear, but I believe you are right, it's probably for the best right now.

Lora

Ruthless... Maybe you will get in on the clinical trial now that they have your name !!! This trial is great news. It means that another respected university is really taking CCSVI seriously. Now we have SUNY-Buffalo and Stanford on our side !!!

ozarkcanoer

ozarkcanoer,

Yes, I think that's my Rainbow in all of this. Darcey did say I would definately get a call for the trial. Where do you stand in all this? I can't remember if you had an appointment yet or were waiting on the phone call as well.

Lora

Lora...
I'm sorry, and I understand the sadness. Really do. I wish that people could just be treated for their diagnosed venous problems, but the situation with neurologists and approved MS protocols complicates matters.

Hang in there, and I'll be thinking of you-
cheer

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

Thanks for the post. I had emailed Dr Dake a couple of days ago and wonder if I'll get the same email. Regardless I still feel help is near and in the meantime Courtney and I are going to do all the other things we can to prepare in changing diet, supplementing specific for vascular problems, I'm thinking of inclining our bed this weekend as well....I've been so emotionally on edge since learning of CCSVI, been keeping it together but on the way home from work today just lost it and started crying.....tears of hope.

Lora... Where do I stand ? Well, I DID have an appointment for a scan with Dr Haacke, but that was postponed indefinitely yesterday, supposedly because of MRI software problems. I am also waiting for some responses from the Hope Center for Neurological Disorders. I have been communicating with them for about 6 weeks. I guess I am in limbo at the moment . But I am still fighting here in St Louis to bring CCSVI to the midwest. I do have a very respected professor and interventional radiologist lined up just waiting for my scans. So I am incredibly disappointed that my scans were postponed .

But I am still hoping and fighting the good fight. And I am cheering for everyone going to Dr Simka and Dr Dake !!!

John - Your post touched my heart. My husband and I are also fighting this fight right along with you, and also planning to do all of those things that we know best to do at the moment. I get upset too at times, but lately it is much more of a joyous outburst, as I have been battling this for over 15 years. I would definately try inclining your bed. It can't hurt! We did ours and I think it really does help some.

Cheer - It's so nice having people on here who understand all of this. It's so much to take in and obviously just a waiting game and a call to action to get others on board. You and your husband are truly an inspiration. I hope you're thinking of writing a book someday!

Ozark - I am truly disappointed for you! We have to look at it as a minor setback though, with much more opportunity on the horizon.

Lora - The clinical study is such a great sign. I have had my share of pity parties, just because I knew that my HMO would never approve going out of state. I guess this means that the possibility of a clinical study in my own state is getting closer to being possible, so I have to be glad for that.

early 2010 is just around the corner. I found out about this in the Spring, and only got my husband seen this past month, so I know what it's like to wait, but the time WILL come.
JohnnyMac, your wife is pretty. I also was very excited and tearful with joy on learning about ccsvi....couldn't sleep for 2 nights! I am glad you are doing all the other things you can, it all helps, even after the intervention.
Good Luck everyone!

Johnnymac,
Boy, if that picture is you (your title is "my avatar pic") I can just imagine how cute your wife is too!!!
LOL, I do hope things work out for you. 2010 is one month, as with all these studies,durg releases, etc. give them 2-3 months leeway to come in late but it will be soon.
Good luck!

I spoke to Zamboni who is not aware of any stoppage in Stanford.
I believe that the high rate of serious complications following stenting of the jugular veins must have triggered an alarm bell, either inside or outside the institution. With any treatment, surgical or not, the balance between risk and expected benefits is of paramount importance. The assessment of such balance is unfortunately not possible yet in the treatment of CCSVI because of lack of widespread evidence of the obtainable benefits.
Zamboni has demonstrated that in his hands the complications derived from the liberation procedure are negligible and some benefits are obtainable. But it is the experience of a single centre and the results must be validated by other institutions.
If we control for a while our anxiety regarding being treated as soon as possible and focus on the great advancement in knowledge that has been achieved in a relatively short time, i.e. the spreading evidence that CCSVI and MS are linked,we should feel less disappointed of the possible delays in treatment that clinical trials will cause.
Until three years ago we had no hope and now we have.
GiCi

Well spoken, Gici, we want the wheels of science to roll to our greater benefit. However money is at the root of all things. Our job is to push this idea on the MS societies or other groups (like the two groups that marcstk suggested) or contribute directly to the Buffalo study and the Detroit study and to the Stanford study. There have been rumors here and elsewhere about limited funding for these studies. Surely no big pharma company is interested in this.

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Chris,

You should be fine. I don't believe they've cancelled anyone, just not scheduling anymore until the trials.

Lora

ps: In your case, I do believe, no news is good news.