STANFORD From Alex to those who got "The Email"

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

STANFORD From Alex to those who got "The Email"

Postby CureIous » Mon Jan 11, 2010 1:51 pm

Just changing the subject line so people don't miss it.

IF you received this email (regardless whether from Darcy, Angela, Alex etc.):

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.


You will receive the following email in the not-too-distant future:

PLEASE NOTE:

*If you have received the letter above you have been placed on our clinical trial waiting list.*



Hello, I am Alexandra Washburne- Dr Michael Dake's patient coordinator. Currently we are only communicating through e-mail. Due to the high volume of inquiries we are making an effort to streamline the volume of patients.



Please be aware that, we currently do not have a date of when the clinical trial will open and we do not know if each individual will be part of the trial! There are no guarantees! But, we are allowing each individual inquiry/patient to be placed on our list. Our list is being sorted by the date of inquiry.



I am currently creating a individual file for each inquiry/patient and if you would like to send any information to be attached to your file. Please send the following:



1) A Brief patient summary of yourself- symptoms, diagnosis, medications ect.

2) Your Demographic information/ or the patient/person you are referring:

- Full name

- Address

- E-mail address

- Best number (s) to reach you

- Date of birth

3) Your personal physician information- (neurologist/PCP)

- Address

- Phone number

- Specialty

4) Any current MRI's (within 1 year) Reports and/or hard disc only!

5) Any current clinical notes from your primary physician/ neurologist. (within 3 to 6 months)



*(I ask that all information be sent in a bundle- Please do not send individually.) *

Please send all information by: regular mail; Fed-Ex, UPS ect.

The following address is:



Address is:

Dr Michael Dake

c/o: Alexandra Washburne

Stanford Medical Center

300 Pasteur Dr

Falk Building 2nd floor

Stanford, CA 94305-5407



We ask for your patience in this time. And hope for all the best in this coming year! Have a great day!

J Alexandra Washburne



Alexandra Duran Washburne
Patient Coordinator for Dr. Michael Dake
Stanford University Hospital
300 Pasteur Dr.
Falk Building, 2nd floor
Stanford, Ca 94305-5407
o: (650) 725-3806
f: (650) 725-3846


Note from me, Alex is working very hard to get all the ducks in a row here, so when the flag drops, she is good to go. PLEASE read all the instructions above when you get them, very carefully.

So if you get nothing by say this Friday or so, then it might be time to initiate further contact. Please note: info goes via SNAIL MAIL or FedEx/UPS, and be sure to send it all at once to keep things moving smoothly. She has hard copy files for everyone on the list, yes, you have a folder with your name on it!!!


Mark. (just relaying info for everyone's benefit)
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 » Wed Jan 13, 2010 10:41 pm

Hi all, the original post was just a heads up, and to help anyone get the ball rolling early on collecting their information to send in. I know at least one person who received this today, hopefully everyone that was expecting it got it too, it was more of a courtesy/heads up deal, but more importantly, if you DON'T get it, and have used all the proper channels, then that might indicate that further communication is needed. Do hope everyone gets in that wants in, beyond the ones that had their appt's postponed.

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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Stanford

Postby kenneb9 » Thu Jan 14, 2010 6:13 pm

Please repost in other threads so everybody sees this. It means that people should go directly to vascular surgeons if they don't want to wait months for Stanford.
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Postby Cece » Fri Jan 15, 2010 12:05 pm

My email is a little different, but ends with the same request for a bundle of information:

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.



Please be assured that we will keep your contact information on file and provide appropriate updates of our work on this important issue.



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





PLEASE NOTE:

*If you have received the letter above you have been placed on our clinical trial waiting list.*



Hello, I am Alexandra Washburne- Dr Michael Dake's patient coordinator. Currently we are only communicating through e-mail. Due to the high volume of inquiries we are making an effort to streamline the volume of patients.



Please be aware that, we currently do not have a date of when the clinical trial will open and we do not know if each individual will be part of the trial! There are no guarantees! But, we are allowing each individual inquiry/patient to be placed on our list. Our list is being sorted by the date of inquiry.



I am currently creating a individual file for each inquiry/patient and if you would like to send any information to be attached to your file. Please send the following:



1) A Brief patient summary of yourself- symptoms, diagnosis, medications ect.

2) Your Demographic information/ or the patient/person you are referring:

- Full name

- Address

- E-mail address

- Best number (s) to reach you

- Date of birth

3) Your personal physician information- (neurologist/PCP)

- Address

- Phone number

- Specialty

4) Any current MRI's (within 1 year) Reports and/or hard disc only!

5) Any current clinical notes from your primary physician/ neurologist. (within 3 to 6 months)



*(I ask that all information be sent in a bundle- Please do not send individually.) *

Please send all information by: regular mail; Fed-Ex, UPS ect.

The following address is:



Address is:

Dr Michael Dake

c/o: Alexandra Washburne

Stanford Medical Center

300 Pasteur Dr

Falk Building 2nd floor

Stanford, CA 94305-5407



We ask for your patience in this time. And hope for all the best in this coming year! Have a great day!


Alexandra Duran Washburne
Patient Coordinator for Dr. Michael Dake
Cece
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Postby merida » Fri Jan 15, 2010 6:42 pm

I have had an MRV based on Dr. Haacke's protocol and it clearly shows a blocked jugular, should I include this in the information package or would that automatically disqualify me from the study?
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Postby CureIous » Fri Jan 15, 2010 10:15 pm

merida wrote:I have had an MRV based on Dr. Haacke's protocol and it clearly shows a blocked jugular, should I include this in the information package or would that automatically disqualify me from the study?


Heavens NO toss it in! Can you tell us about your MRV? How did you go about getting it, do you know what type of machine?

Far as I know, there aren't any "automatic disqualifiers", at least that anyone here is aware of, save for possibly some stringent inclusion criteria. I.e. you most probably will HAVE to be dx MS, but that's just me talking.

Glad to see people are getting the letter though. No rush on getting the info in either, take your time and do it right....

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 merida » Sat Jan 16, 2010 7:22 am

Hi Mark,

Thanks for responding. I will definitely include it in the package.

Regarding the MRV, I was having no luck getting my husband tested in Canada or the US even after calling at least 15 private clinics as well as our GP in Toronto.

We spend the winter in Merida, Mexico and my husband, who has had RR MS (borderline SP MS - the neuros can't decide) for the last 34 years, has a neurologist here. We presented him with all of the information and he actually read it. He agreed that we should have the MRV and advised us that he would check at the private hospital here in Merida (Star Medica) to ensure that they had the equipment and software to perform the test. They did, so he set us up with the Director of Radiology, Dr. Rosado. (I'm not sure what the machine is but it was definitely state of the art).

I provided Dr. Rosado with Dr. Haacke's protocols and we spent about an hour and a half discussing the requirements. He advised that he could do everything but the SWI as they did not have the software for this particular scan. I was not too concerned about this as the SWI scan measures iron content and lesions on the brain. It is not necessary to have this information to determine if you have stenosis of the jugulars which was our goal.

I have a few pictures that show his blocked jugular that I would like to share if you can tell me how to post them.

Our next steps:

- We provided our GP in Toronto with a copy of the DVD of Rick's MRV and have requested that she send it to an interventional radiologist and vascular surgeon.

- We are also arranging to meet with an interventional radiologist and a vascular surgeon here in Merida to review the MRV in more detail. We are not planning to have the procedure done here.

- We have added our name to the waiting list for Dr. Simka in Poland and are still waiting to hear back from him.

- We also received the original email from Standford regarding the clinical study and are in the process of putting the information package together for Alex.

Trying to cover as many bases as possible.
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Postby ozarkcanoer » Sat Jan 16, 2010 8:29 am

merida,

You are doing great work ! More hope for the rest of us !!

ozarkcanoer
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Postby Sharon » Sat Jan 16, 2010 8:56 am

Merida -

This is very good news - I also think it is the first report of testing being completed in Mexico. Good fortunes to you and your husband as you proceed. Sounds to me like you are covering all the bases.

Sharon
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Postby Chicagoboy23 » Sat Jan 16, 2010 9:31 am

Hi,

I had received the 1st email from Alex, but not the second. Although it may sound like it was a response from the influx of new responses.
In Chicago, I had meet with a head neuro from a major university, who is dismissing the Zamboni Theory on the basis of inflamation in the brain in MS. He claims there is iron deposits thruout the body...but gives no credit to venous insufficiency and blood in the brain. I had prepared my arguments, and my only victory was the patient testimonials from CCSVI treatments. This Dr is involved with a clinical trial on Stem Cell rebooting, and has 20 patients within that trial. Each of those patients have had status quo or below results after treatment. None have had a marked improvement in symptoms compared to CCSVI.
My goal is to get imaging and treatment stirred up locally.
I have spoken to a Vascular Dr...and he is on board but requires further education. I have 2 Radiologists that I will be meeting shortly....but these guys are all sooo busy...and it is hard to get somebody to care enough to make time for you.
I was scheduled to go to Stanford in Dec...and I just hope to get there soon.

Mark from Chicago
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Postby ozarkcanoer » Sat Jan 16, 2010 9:58 am

Chicagoboy,

Maybe it will be easier to convince doctors after the announcement of the first 500 participants from Buffalo (BNAC) by Dr Zivadinov et al. And the announcement should be less than a month away !!

I also must say that I did the same thing here in St Louis as you did in Chicago. I approached people who research neurological diseases back in early November. Although I am told that they are interested in CCSVI there is no activity. I also approached a neuroradiologist and got some interest, but not enough for any activity.

My best hope now is Buffalo !! And also all the meetings at the beginning of February with Dr Zamboni, Dr Haacke and everyone !! But it is so hard to wait.

ozarkcanoer

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Postby jay123 » Sat Jan 16, 2010 10:21 am

merida wrote:Hi Mark,

Thanks for responding. I will definitely include it in the package.

Regarding the MRV, I was having no luck getting my husband tested in Canada or the US even after calling at least 15 private clinics as well as our GP in Toronto.

We spend the winter in Merida, Mexico and my husband, who has had RR MS (borderline SP MS - the neuros can't decide) for the last 34 years, has a neurologist here. We presented him with all of the information and he actually read it. He agreed that we should have the MRV and advised us that he would check at the private hospital here in Merida (Star Medica) to ensure that they had the equipment and software to perform the test. They did, so he set us up with the Director of Radiology, Dr. Rosado. (I'm not sure what the machine is but it was definitely state of the art).

I provided Dr. Rosado with Dr. Haacke's protocols and we spent about an hour and a half discussing the requirements. He advised that he could do everything but the SWI as they did not have the software for this particular scan. I was not too concerned about this as the SWI scan measures iron content and lesions on the brain. It is not necessary to have this information to determine if you have stenosis of the jugulars which was our goal.

I have a few pictures that show his blocked jugular that I would like to share if you can tell me how to post them.

Our next steps:

- We provided our GP in Toronto with a copy of the DVD of Rick's MRV and have requested that she send it to an interventional radiologist and vascular surgeon.

- We are also arranging to meet with an interventional radiologist and a vascular surgeon here in Merida to review the MRV in more detail. We are not planning to have the procedure done here.

- We have added our name to the waiting list for Dr. Simka in Poland and are still waiting to hear back from him.

- We also received the original email from Standford regarding the clinical study and are in the process of putting the information package together for Alex.

Trying to cover as many bases as possible.


Merida,
If you have a doctor and hospital you trust there I would be speaking to them about having an interventioanl radiologist look at the MRV's and correct the problem right there!
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Postby merida » Sat Jan 16, 2010 1:18 pm

Hi Jay 123,

We will be meeting with an interventional radiologist here, hopefully next week. I'm hesitant to do the actual procedure here even though I know they have the facilities and the specialized doctors (most having trained in the US or Europe).

Once we meet with the interventional radiologist we will determine what our options are here. If they are interested in contacting the other doctors already involved (Dr. Dake, Dr. Zamboni, Dr. Simka) to get up to speed I think we would entertain having the actual procedure done here.
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Postby jay123 » Sat Jan 16, 2010 2:00 pm

You definitely should. No one knows how long it will be before the neuros at Stanford - err I mean the administration lets Dr. Dake start again. If you have someone with a good reputation who has done work with veins go for it!
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Postby merida » Sat Jan 16, 2010 2:06 pm

Thanks... I will definitely pursue this and do the necessary leg work to confirm if this is a viable option. I'll post my progress with the interventional radiologist.

By the way, as this is off the Stanford topic, would it be more appropriate to start a separate "Mexico" post? I'm new at this.
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