Who is waiting for Dr. Dake?

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

Who is waiting for Dr. Dake?

Postby healthymama » Wed Nov 18, 2009 9:19 am

I just thought it would be interesting to see who is waiting to see Dr. Dake. Maybe those of us who have our paperwork in could post here and keep the rest of us updated on the process, then post on the skicky post when we have the procedure. Some of us may end up at Stanford at the same time!
Last edited by healthymama on Wed Nov 18, 2009 9:25 am, edited 1 time in total.
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In the mail...

Postby healthymama » Wed Nov 18, 2009 9:24 am

I put my paperwork in the mail on November 10, 2009. Still waiting for a reply.
From: Utah
Age: 28
How MS affects me: I am very lucky to be very new to MS. Optic neuritis, fatigue, 10 lesions.
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Postby Ruthless67 » Wed Nov 18, 2009 9:26 am

Hi healthymama,
I spoke with Darcey on 11/3/09 and had my medical records sent to Stanford. I spoke with Darcey again on 11/10/09 to confirm their reciept of records. Darcey said the next step is to wait for Dr Dake to call for phone consultation. So.......I'm Waiting.............patiently............lol
Lora
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Postby CRHInv » Wed Nov 18, 2009 9:37 am

You guys hang in there. It is so worth it.
Healthy - I was pretty new to, I am so glad I did this. I can think! I was worried about loosing my legs, but I will tell you having my brain back is unbelievable!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Sawdoggie » Wed Nov 18, 2009 11:03 am

I sent everything in around the first of October, Dr. Dake called on October 9 and after a nice conversation said he would have Alex get in touch with me soon regarding next steps, and I am wainting on follow up from their end. I have sent a couple "do you need anything else" emails about every two weeks but have not gotten a response. I'm assuming that they are just swamped.
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Postby Shannon » Wed Nov 18, 2009 12:19 pm

Hi - I am on about the same timeframe as sawdoggie as far as when I got things rolling. I've already spoken to "the doc' and I am just patiently waiting for something more to happen now. I also send e-mails to Alex every couple of weeks to give helpful information or to just ask what is going on. I never hear back either, so I just wait. :) I would love to meet anyone else who is having the procedure when the time comes! Do any of you waiting have an HMO for insurance?
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still waiting, too

Postby hoodyup » Wed Nov 18, 2009 12:58 pm

Boopieup has her MRI in and Dr. Dake phoned and said she has nothing to lose so he said he would forward her case to the scheduler. This was back in early October. I left a couple of follow up messages for Alex and Darcy, but I think that it is true--they are more swamped than we can know. And there is only one Dr. D.

Fingers crossed,
Andrew
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Postby MaggieMae » Wed Nov 18, 2009 1:32 pm

We are still waiting (since August) to get my husband's appointment scheduled also.
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Postby Boudreaux » Thu Nov 19, 2009 10:10 am

Darcey received my records around November 13, waiting to hear from them.
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Postby zap » Thu Nov 19, 2009 10:36 am

hmm, I hope that the pressure from the neuros at Stanford (referred to obliquely by Gibbldedook) hasn't made Dake stop scheduling new patients?

Saw in another thread that no new folks are getting scheduled, but seems to be plenty of demand.
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Postby CRHInv » Thu Nov 19, 2009 11:16 am

I don't think the neuros are getting to him. Something about this came up while I was there last week. I said "please don't stop" and he said oh I won't, or something very close. He wants to do this.
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Back on the list

Postby bibliotekaren » Sat Nov 21, 2009 9:09 pm

I'm one of the folks in line. And, I'd say none too soon -- just watched the Canadian documentary!

I first contacted Dr. Dake's office in July and spoke with him sometime in August. Unfortunately, I had to take myself off the list when another health issue cropped up and I needed surgery. Was so disappointed. But spoke to Darcy the other day and am back on!

Hope to cross paths with some of you...
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Postby turbotaguy » Sat Nov 21, 2009 11:07 pm

Is the contact info for Dr. Dake listed on another thread? I am looking through all of the threads tonight trying to find it.

Also, has insurance covered any of the stent procedures done so far? Or are most folks paying out of pocket? What is the general cost?
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Postby Shannon » Sun Nov 22, 2009 5:42 pm

Turbotaguy - Hey, how are you? I recognize you from MsWorld, and we met once at a conference here in Troy. Great to see that you are also interested in this! I am currently trying to get insurance to cover this. Many here on the board have had the surgery with their insurance coverage. I believe the total for everything comes to around $80,000, not including flights and accommodations. Way too much for out-of pocket! But, I think you'll also find that some have had to pay a considerable amount of it themselves, some with a financial payment plan set up. I am currently on an HMO, BCN of MI, so I think Alex is really not getting far in my case. I really want to do this, but time will tell if it will ever come to fruition. There is a thread called Dr. Dake's Contact info., which I think will lead you in the right direction. Good luck to you!
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Postby healthymama » Mon Nov 23, 2009 8:41 am

Shannon,
I thought the totals were more like $12,000, plus travel. Do you have a link or source where it says $80,000? I searched for cost in this forum a couple weeks ago and I think it was even Cheer who broke it down to $12,000.
I could sell my car and do $12,000, but $80,000 is out of the question for me. =(
Thanks!
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