Jacobs Neurological Institute

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

Jacobs Neurological Institute

Postby Needled » Wed Jul 01, 2009 2:13 pm

I know their study has been covered in parts of other topics. I wasn't sure where to put this, so I thought I'd start a new one. I finally got confirmation and my dates are set for September. The one thing I was told that's a bit different from what others have said is that I will get a written report of my doppler and MRI results a week or so later. I wasn't expecting that, so that's good. I just want them to get this study done so they (or someone else) can get onto the next leg of it. Maybe an internventional trial? This feels like a slow boat to China (no offense, JNI) compared to the folks at Stanford, but it's something.
Bob, I hope everything worked out for your wife. I can't remember if she already went or is going soon.
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Postby mrhodes40 » Wed Jul 01, 2009 3:48 pm

I do not know much about this but what Sharon was told--heresay cause she is on vacation-- was that you will get your MRI only. The dopplers though are what the study is for and you don't get that part--that is their secret.

So either the person you spoke with misunderstood what you would get or the person who told Sharon misunderstood.

My GUESS is that you would not get the doppler part because if they let everyone have their dopplers then you could all yak about it and "release" the information ahead of time.

Bob's wife is going soon maybe he'll come on and say what they said
about that............

How's that for jot knowing what the heck and yakking about it anyway? :oops:
Sharon told me to hold the fort I'm just doing what I was told... :lol:
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Postby Lyon » Wed Jul 01, 2009 4:48 pm

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Last edited by Lyon on Sat Nov 26, 2011 10:37 am, edited 1 time in total.
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Postby bestadmom » Wed Jul 01, 2009 5:32 pm

Hi Needled,

I'm so glad you got confirmation of getting the reports. I called earlier this week to see exactly what I'd get or not, but haven't heard back yet.

Michelle
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Postby javaneen » Wed Jul 01, 2009 5:41 pm

Hi everyone, I spoke with the person from JNI directly (sorry I can't remember her name) and she said we will NOT get copies of anything except our MRI if we request it. We will not get a report or any information about the results. Please let me know if I am wrong.
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Postby patientx » Wed Jul 01, 2009 5:44 pm

Needled:

With whom did you speak at Jacobs? I left a message there today, and am waiting to hear back, but I'm not sure I left a message with the right person.
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Postby Needled » Thu Jul 02, 2009 3:48 am

It seems like there’s a lot of different info floating around, and I didn’t mean to stir the pot. I hesitated to post what I did because they have strict recruiting guidelines, and I got the feeling they were getting a lot of calls with questions about what tests results they were giving. For me, it didn’t matter what results, if any, I got because I was (and am) still going to do the study. There’s also a confidentiality agreement involved, so you can’t do anything with whatever you get, including posting results here or going to other doctors. I probably shouldn’t have said anything, but I wasn’t giving anything away and sharing info has gotten us all this far, so I didn’t feel right not saying anything. OK, that’s my last word-- I'll be quiet now so I don't create any more confusion and/or get kicked out of the study. :)
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Postby cheerleader » Thu Jul 02, 2009 5:40 am

I think since this is all new- confusion can be expected.... from what we've learned, Jacobs is doing a blinded study. They initiated it, they pay for it, they own the results. There is a confidentiality agreement folks will need to sign.

I approached Dr. Dake on my own, gave him the Zamboni research and he decided to pursue looking at this paradigm in MS patients. The Stanford research was patient initiated and is paid for by patients' insurance.

If MS patients want to get other doctors to read the Zamboni research and maybe test them or for CCSVI, there is nothing wrong with that...but being part of a blinded study and getting a CCSVI treatment or diagnosis are two very different things. It's a great thing to do the Jacobs study...you're helping move the research along...and you may get more info on your personal case, once the study is completed.
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Postby bestadmom » Mon Jul 06, 2009 11:24 am

Hi all,

Christina at Jacobs just called me back to confirm that if the mri/mrv oprator is asked for a duplicate disk, all we can have is the mri. But, as they told Needled, all participants will get a written report from the diagnostic team.

Because there are no set standards on the testing they do not want anyone to use the info in the report as the "end all" to a definitive diagnosis. So basically it's buyer beware. Their process keeps changing as questions arise, so this is not set in stone.

Part of the goal of this testing is to find the definitive test that will be a benchmark for the industry and insurance.
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Postby mrhodes40 » Mon Jul 06, 2009 11:49 am

Because there are no set standards on the testing they do not want anyone to use the info in the report as the "end all" to a definitive diagnosis. So basically it's buyer beware. Their process keeps changing as questions arise, so this is not set in stone.


That is clearing up a lot. I wonder if this means they have NOT been given the specific instructions about how EXACTLY Zamboni does dopplers and how he interprets the results. It may be true that people from Ferrara did these and Jacobs ONLY follows up with MRI.

I know for certain that Dr Z means to offer a training in his doppler techniques as well as his Liberation Procedure as a replicable protocol after his work is proven, so maybe Jacobs is trying to find their way to the results they see without knowing exactly how everything was done? Thus they are not "expert" in this as we imagined??

Speculation!! never stopped me yakking before :oops:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby bestadmom » Mon Jul 06, 2009 12:21 pm

I thought Zamboni was going to Jacobs to work w/Dr.Guttman. I think I read that somewhere on TIMS??? Anyway, I bet this is their way of protecting themselves, so that if they miss something, we can't fault them.

Since Dr. Dake is the only doc in the US doing interventional surgery, I'm sure he will do his own testing. If I go up to Buffalo as scheduled, this will just be a stepping stone to Cali. If we can only figure out how to get my insurance to pay for it.....
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Postby patientx » Sun Jul 26, 2009 9:25 am

Well, I tried to volunteer for the study at Jacobs, but I think I'm giving up. I thought I would help advance the cause. But, my repeated attempts to contact someone regarding the study have not met with success. The one person I did speak with (in administration), seemed annoyed that I called and that I even knew of the study's existence. I got the impression they are keeping any knowledge of this study very close to the vest.

Oh well, I wish them luck.
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