E-mail from Dr. Dake

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

Postby chrishasms » Fri Dec 04, 2009 10:18 am

Last edited by chrishasms on Sat Dec 05, 2009 1:07 pm, edited 1 time in total.
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Postby Johnnymac » Fri Dec 04, 2009 10:33 am

chrishasms wrote:As a good friend of mine used to say when he was happy....BEER!

:lol: :lol:

I like you! Wish you were close to Dallas, would be fun to hang out.
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Postby Sharon » Fri Dec 04, 2009 10:36 am

Chris - if you haven't received the email from Dr. D. you are good to go.

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Postby jay123 » Fri Dec 04, 2009 10:42 am

My fav song I think really sums up life, "God is great, beer is good, people are crazy!", especially us CCSVI'rs!!
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Postby Shannon » Fri Dec 04, 2009 12:18 pm

Hmmm...still no e-mail for me. I don't really know what to think. :lol: Hopefully I am close to being approved, rather than thinking that they've simply forgotten about me altogether!
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Postby MaggieMae » Fri Dec 04, 2009 12:18 pm

I'm just wondering what all this means for my husband. We have been trying to get his appointment with Dr. Dake since August. Talked to Alex a few times and Dr. Dake once. Left e-mail a few weeks back asking for dates in January. Nothing.
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Postby Sawdoggie » Fri Dec 04, 2009 12:33 pm

I am wondering the same thing. I haven't been able to get in touch with anybody out there or heard anything since I talked to Dr. Dake in early October.
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i'm a little confused

Postby cervin » Fri Dec 04, 2009 12:46 pm

Sorry to be dense, but could someone just spell it out for me- i have a phone call into Dr. Dake. i have never heard back from anyone, nor have i ever sent them any medical documentation. Does this mean i will not hear from them, nor do i stand a chance at the clinical trial?


Also I sent Dr. Simka an email. Is that best way to reach him? I have not heard back yet, so i was just wondering.
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Re: i'm a little confused

Postby ErikaSlovakia » Fri Dec 04, 2009 12:57 pm

cervin wrote:Also I sent Dr. Simka an email. Is that best way to reach him? I have not heard back yet, so i was just wondering.

Yes, e-mail to Dr. Simka is the best way to reach him.
Good luck!
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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in the same boat

Postby hoodyup » Fri Dec 04, 2009 1:17 pm

I guess a lot of us are in the same boat. Boopieup and I have been waiting for a call from the scheduler after receiving a call from Dr. Dake back in early October in which he said "you don't really have anything to lose" ie. "go for it". In this case I guess pitching a fit won't help (will it?). We don't have a clue yet whether she will be considered a good candidate or if the cuts in Medicare will be a factor in the decision to see certain cases. The not knowing is worse for us than the waiting, although time is not on our side as she is progressing fast. Here's hoping for some speedy grease for the wheels to move forward. Sorry to vent, feel a little better now.
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Postby hoodyup » Fri Dec 04, 2009 2:21 pm

Boopieup just got a call from Alex saying that all surgeries were cancelled until February due to the clinical trials. She also said possibly late January or early February and that we are still on the list and in her top drawer. Yay. At least we have something to look forward to. It certainly doesn't sound like they are shutting down anytime soon. Let's hope the clinical trial does a lot to help the cause and helps prove out the theories behind CCSVI and MS. Once again, yay.
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Postby Shannon » Fri Dec 04, 2009 2:29 pm

Oh, good! I bet I am in the top drawer then too, and the others of us who have the ball rolling already. Cool. Wouldn't it be wonderful if we could bypass our insurance companies altogether to be in the clinical trial? Possibly for free, or very inexpensively? :P
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Postby jr5646 » Fri Dec 04, 2009 2:32 pm

I sent Darcey an e-mail today (thanks for the heads up, Lora) since I haven't heard anything...

Yep, I got the same dreaded reply... wondering if this may be a good thing though? meaning we may not have any out of pocket expense (co-pays, deductables) and such??? other than maybe travel and hotel?? just trying to take something positive out of this, i guess... Not to mention an additional study adds to the validity.. Its prob. way too early to speculate on criteria? The way my luck goes, I'll be excluded!

Man, I was sooo looking forward to visiting the bay area too as I lived there for a short time when I was a kid... :cry: I'll still keep planning my itinerary though..

For those of you who havn't heard anything, I would suggest a brief e-mail to Darcey...

I called them in early Oct. - had not heard anything.. called back about one week later.. I finally talked to Darcy and she sent me the questionaire and I ordered copies of my latest mri's and reports.. Everything was sent priority mail by 10-31

I suppose those who have suggested "stepping back" were right... Keeping my fingers crossed :D Stay positive....
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Postby EnjoyingTheRide » Fri Dec 04, 2009 5:46 pm

I just got the identical email from Dr. Dake. Clinical trial starting early next year.
Please visit my blog at www.enjoyingtheride.com
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Postby SandyK » Fri Dec 04, 2009 11:03 pm

I got the same email. It deflated me a bit. I guess I can stop the financial assistance paperwork at least!
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