List of Those Who Had/Scheduled to Have Procedure-Stanford

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

Postby radeck » Fri Oct 16, 2009 7:18 pm

MaeggieMae, I talked to them first in mid August, which I think was just before they started getting really busy. Wouldn't be surprised if the small difference in time between your first contact and mine made all the difference. Hope you'll be getting an appointment soon.
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Postby CureIous » Fri Oct 16, 2009 11:00 pm

radeck wrote:MaeggieMae, I talked to them first in mid August, which I think was just before they started getting really busy. Wouldn't be surprised if the small difference in time between your first contact and mine made all the difference. Hope you'll be getting an appointment soon.


So sorry it's taking so long Maggie! I think also there was that lag because of his vacation (That pushed me off about 4 days), and the various conferences etc things got stacked up. Alex just got some help in the office so she is getting up to speed also. Alex only does 3 days or so a week in there, she is stretched between 2 diff. departments. Did you try a follow up call or an email perhaps? We are rooting for you! :) 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 Oct 16, 2009 11:05 pm

MaggieMae wrote:Just added Radeck and CRHInv to the list.

We are still waiting for our appointment. I started this procedure back in June with our neurologist. After a failed MRV (radiology did an MRA instead) in July and contacting Alex in August, we finally talked to Dr. Dake the end of September. I have e-mailed Alex a few times and have not heard back. This is getting frustrating. I think because of my husband's age (60) and he has been sick for 35 years, they just arent' interested in him as a candidate.


Maggie, you said that you talked to Dr. D at end of September, did he mention that he was handing your file back to Alex for scheduling? When he did that with me, it was so laid back, I wasn't even sure I was in! When she gets your file she does the insurance stuff and scheduling for all the MRI stuff and OR. I'm almost positive that if Dr. D wasn't interested, he would have said so already, though I'm not aware of that happening yet....

We're rooting for ya! :) 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 MaggieMae » Mon Oct 19, 2009 5:51 am

Thank you all for your concern. Makes me feel better.

Yes, Dr. Dake said he was giving my husband's file to Alex and she would be contacting us. I had e-mailed Alex on October 1st (since we did not hear from her) and she assured me that she had not forgotten about us. I sent another "we're still waiting" e-mail, but haven't heard anything.
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Postby MaggieMae » Fri Oct 23, 2009 8:58 am

Inge67 -

Here is the list of those that I have compiled from reading this forum. You can see there are many who have had the procedure and they are not posting in the Sticky that was created.

Check out the beginning of this topic for the list.
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Postby mrhodes40 » Fri Oct 23, 2009 10:18 am

What if you copy /pasted the list into a new post and somehow marked the ones who have posted to their sticky post so that those who did not will get a tickle to do it.
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
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby CNClear » Fri Oct 23, 2009 11:02 am

I got scheduled!! My dates are Dec 8th and 9th!!

Apparently, someone had a baby and is out on maternity leave and that was also causing a back up for appointments!

Don't give up! It's happening!! :D

Anyone ELSE scheduled for the same time frame as I???? (Now I'm going to try to figure out where I am supposed to post this info...hmmm...)

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Postby Sharon » Fri Oct 23, 2009 11:11 am

Lisa -

Start your own thread - easy way for you to document your journey to Stanford.

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Postby zap » Fri Oct 23, 2009 11:55 am

Lisa - I will be getting tested Dec 7 and (potentially) stented on Dec 8th, maybe I will see you there!!
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Postby CNClear » Fri Oct 23, 2009 12:21 pm

Hi Sharon...I did put my preliminary info on the log...I've got more to fill in, but it's a start!

Hey Zap!
Yes, let's try to meet! I just LOVE reading 'teapots'...I sent you a PM with cell phone numbers...I'm so excited!

Lisa
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Postby MaggieMae » Mon Oct 26, 2009 8:28 am

Lisa,

If you look at the list at the beginning of this thread, you will see by the dates that Zap is scheduled for testing on 11/7.

Correction 12/7/2009
Last edited by MaggieMae on Tue Oct 27, 2009 5:35 am, edited 1 time in total.
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Postby zap » Mon Oct 26, 2009 12:28 pm

MaggieMae wrote:Lisa,

If you look at the list at the beginning of this thread, you will see by the dates that Zap is scheduled for testing on 11/7.


eh?

MaggieMae wrote:Zap - 12/07/09
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Postby ozarkcanoer » Mon Oct 26, 2009 6:35 pm

I noticed on the list of people who have gone to Stanford that there are 2 people who had the testing but no procedure. Did these people not have the procedure because no stenosis was found ??? Or was stenosis found but they elected not to have the procedure ???
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Postby MaggieMae » Mon Nov 02, 2009 10:50 am

Ozarkcarnoer,

There were other issues with both patients. Marie just answered the question about Island Girl just recently on one of the posts here. Look over the profiles of Island Girl and Coach and you will be able to read about their tests and what was found.
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Postby coach » Mon Nov 02, 2009 1:03 pm

This is Coach checking in. I am going back to Stanford for another MRI/MRV on 11-11 and procedure 11-12. Alex's voice mail directed us to Darcy Gibbs who has set me up with those dates. Having concerns about Coumadin use. I understand the recommendation, but just received my Health and Nutrition health e-tips (Dr. Jonathan Wright of the Tahoma Clinic) which referenced some research presented at the American College of Surgeons 2009 Clinical Congress which showed an increased risk of dying from a traumatic injury in both ederly and younger patients (more than double). There have been two negative experiences with Coumadin in our family- one with my mother and a lower GI bleed which required tranfusions and one with my husband's mother after intestional surgery ( cascade of events) which led to her death as a result of internal hemorrhage post op. We spent a day in ICU watching the life drain from her body. Coumadin definitely played a role. I'm more interested in trying a more natural anticoagulation therapy with cod liver oil, natural vitamin E, aspirin, and nattokinase. Don't know if I will have much luck in convincing my husband or Dr. D of letting me try this approach. I understand the risk of clot but I also understand the risk of coumadin and I know it is widely used but its risk profile in the PDR is somewhat unsettling. Don't want my reservations to be a showstopper and will proceed even if I have to use the coumadin. My symptoms have grow3n much worse since September ( balance and walking are awful ) I exercise caution, but still have the occasional fall.
I don't go on solo errands anymore- just don't have the stamina.
Will update when I know more.
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