STANFORD From Alex to those who got "The Email"

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

Postby jay123 » Sat Jan 16, 2010 2:23 pm

If you make any progress in mexico you should start a thread.
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Postby Sharon » Sat Jan 16, 2010 5:00 pm

Merida -

Yes, I would start a new topic.

Sharon
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Postby merida » Sat Jan 16, 2010 8:39 pm

Thanks for your feedback Sharon and Jay. I will start a new thread with our progress.
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Postby CureIous » Sat Jan 16, 2010 9:00 pm

merida wrote:Thanks for your feedback Sharon and Jay. I will start a new thread with our progress.


Absolutely, we don't want your story buried in this thread! Thread's pretty much dead anyways, as everyone has the letter that should have it, and the ones who DIDN'T get it, know they may need to initiate further contact, so mission accomplished!

Not say that Alex may not send out another round later. Haven't the foggiest notion...

:) Mark
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 hoodyup » Thu Jan 21, 2010 12:48 pm

I don't know exactly where we stand re: the clinical trial. We received the following email and no other.


Dear ______,

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.
Professor, Department of Cardiothoracic Surgery
Stanford University School of Medicine
Falk Cardiovascular Research Center
300 Pasteur Drive
Stanford, CA 94305-5407


One day before we got this email, Alex called and said we were in the top drawer and would be among the first to be contacted when the trial started. Then we got this form email and after that nothing. I'm not wanting to bug them or add to their correspondence volume, but I don't know if we are still on the list for the trial or not. Possibly she is not a good candidate for the trial being that she is SPMS and has a very high (8.5) EDSS. Any other progressives not get the second email or am I second guessing too much? Waiting is hard, but waiting in the dark is worse.

Andrew
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Postby Ruthless67 » Thu Jan 21, 2010 2:10 pm

Hi Andrew and TIMS members,

I'm with you & your lovely wife, waiting it out too, lol, along with quite a few others. It is hard not to e-mail or call Stanford! It would at least be nice to have some idea of when the trials might start........

My husband & I happen to be here in Napa, CA in our motor home since October visiting with family and I also had my paperwork in with Dr. Dake and was waiting for his phone call. We had hoped to have had my diagnostics and/or procedure done by now and be down in sunny warm Arizona with friends. But alas, here we sit in the damp rain.

We have decided to go ahead and drive down to Arizona when the weather breaks and come back when the trials start. We are allot more fortunate then some as we are retired and travel "in our own home". I hate the waiting too! I wish we had more information, but we don't, so we will proceed with our original travel plans. (Before hearing about CCSVI)

I enjoy signing on to TIMS everyday and reading the posts. Somedays are more entertaining then others and some are very informative. I've certainly learned allot and have put some of what I've gleaned into my daily protocal. For now I'll just have to settle for that.

Stay focused and positive and I'll see you all somewhere down the road, might even be Stanford :=)

Lora
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Postby CureIous » Thu Jan 21, 2010 3:18 pm

hoodyup wrote:I don't know exactly where we stand re: the clinical trial. We received the following email and no other.


Andrew


I have no inside info whatsoever beyond passing on the email, but, the purpose of posting it was (beyond informing everyone to watch out for it) that if you didn't get the follow up with the questionaire, that would be a good time to attempt further contact, as it is my understanding Alex was sending those out all at once. Without question there is no concrete word on trials or when they might begin, nobody knows, maybe not even Dr. D himself. Maybe the neuros want to get everyone on the oral meds before agreeing to fix them lol. Well not "lol" but you know what I mean. Good grief Lora don't leave in THIS weather! Nasty! ;)

Mark
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 hoodyup » Thu Jan 21, 2010 5:04 pm

Thanks guys, you tipped the scale in favor of just one more email to Alex. Hope she doesn't think we are being too pushy. We are in a different category from the people who had actual appointments. And we are not in the later crowd that came after the CTV story aired. We were about to be scheduled when the whole trial thing came up. At least we didn't get turned back at the door. And our travel time will only be a couple of hours as we are in Northern Cal. As fun as RV travel sounds, Ruth, I hope you have some tie down straps for that thing. That wind was wicked the other day.
We'll take the hotel when and if...

Hope to see you and other TIMSers when the trials begin.

Andrew
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Postby hoodyup » Fri Jan 22, 2010 1:02 pm

Alex called this morning and reassured us that we were still at the top of the list for the trial. We didn't get the email with the questionnaire because we had previously given her all they needed during our emails and phone conversations. I am glad that she went out of her way to get back to us so soon even thought I know they are extremely busy. I get the impression that she really wants to help and it is rare in health care to find someone who actually does care. Now, on to the trials...LET'S GO!
Andrew
BTW, thanks Mark. Knowing is much better!
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Postby onesickrace » Fri Jan 22, 2010 5:19 pm

hoody, if i may ask, when did you initially turn your information in to stanford?. i sent everything out to them on the 18ths of december and ive received both emails from alex. i know they are busy and im not one to bother and i can be patient, so im sort of trying to figure out where about i am on this list. and congrats for being on the top of the list. this is all very exciting and hopefully it gets pushed thru as quickly as possible.
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Postby CureIous » Fri Jan 22, 2010 10:39 pm

hoodyup wrote:Alex called this morning and reassured us that we were still at the top of the list for the trial. We didn't get the email with the questionnaire because we had previously given her all they needed during our emails and phone conversations. I am glad that she went out of her way to get back to us so soon even thought I know they are extremely busy. I get the impression that she really wants to help and it is rare in health care to find someone who actually does care. Now, on to the trials...LET'S GO!
Andrew
BTW, thanks Mark. Knowing is much better!


So happy it all worked out, makes for a LONG weekend thinking, "maybe I should have called Friday".

Alex is an absolute gem in the medical field. From what I understand they are attempting to clone her at this very moment with zero success :)

Mark
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 CureIous » Fri Jan 22, 2010 11:05 pm

onesickrace wrote:hoody, if i may ask, when did you initially turn your information in to stanford?. i sent everything out to them on the 18ths of december and ive received both emails from alex. i know they are busy and im not one to bother and i can be patient, so im sort of trying to figure out where about i am on this list. and congrats for being on the top of the list. this is all very exciting and hopefully it gets pushed thru as quickly as possible.


Heya sick, I think when we speak of lists here, there's the "trying to get in the study" list, and the other list which is people who were scheduled, or in the process of getting scheduled, who are being bumped to the top of the list, but the other 1490 some odd people are sorted by date of initial contact for entrance into the study, but that doesn't in my mind mean that it is "first come first serve". Nobody knows what the exclusion/inclusion criteria are going to be, period. Some however are "sure things" because they were already sheduled or in the queue when things got shut down. Hope all that malarky makes sense... Feel free to chime in anyone that knows different!

Mark.
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 onesickrace » Fri Jan 22, 2010 11:39 pm

thanks for info on both posts, much appreciation.. this is looking better and better everyday i read about someone elses disappearing symptoms..
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lack of communication

Postby rettahb » Sun Jan 24, 2010 12:04 pm

Hoodyup, I was in the same position as you. Having talked to Dr. Dake and then waiting on Alex the scheduler to call, then I got the generic email putting all on hold.

I just yesterday sent another email to Alex asking for verification that I'm not lost in the pile....... I hope I'm as lucky as you and I hear from her.

Best of Luck!
~retta
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Postby hoodyup » Sun Jan 24, 2010 12:41 pm

Hi, Retta and Sick. Guess there are a lot of people in the boat with us. We originally contacted Alex in late Sept/early October. I am sure that Alex will get back to each person as soon as she is able. She seems to take great care for all the people who have contacted her for help. In light of the delays with the trial I am also looking into alternatives. I am emailing neuroradiologists in our area in hopes of finding another "maverick" like Dr. Dake, who is interested in taking on new challenges. Seeing that others have had some success doing this has given me some hope that other vascular docs could be brought on board. It might be worth it to check out your other options, esp. if you aren't in California anyway. Good luck to you!

Andrew
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