Hi everyone.

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

Hi everyone.

Postby CureIous » Wed Jul 15, 2009 12:40 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 2:48 pm, edited 1 time in total.
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Re: Hi everyone.

Postby cheerleader » Wed Jul 15, 2009 12:57 pm

CureIous wrote:
Maybe I can ask a question, does one really need their neuro on board for this? I haven't approached mine yet but he doesn't strike me as the kind that would be receptive (I could be wrong about this too). My GP however I KNOW will be. So being that one needs to monitor various levels of clotting factors and such for a time afterwards, can I use my GP for that and bypass the neuro? (If necessary).

CureIous


Welcome, Curious. Glad you found this discussion and are in touch with Stanford. Believe it or not...my husband's neuro still doesn't know. We'll tell her someday :) It is not essential to have your neuro on board. BUT it is very important (as we learned the hard way) to have a GP at home to turn to for blood tests and after surgery care...they are the ones that handle this area.
let us know how all goes for you, and thanks for coming out of the shadows to say hi!!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby skydog » Wed Jul 15, 2009 1:08 pm

Welcome aboard, Yes this where its at. You are wise to be so proactive at this time. Nothing like this before and it may take time to get the rest of the medical community rolling. I have a Nature path and a nurse practitioner to work with, and am quite comfortable seeking out the info I need to call my own shots. Blood work is easy, just had my first results in and it looks like I need to bump up the warferin a touch. Two weeks out of surgery and doing great. Cheers, Mark
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Postby peekaboo » Wed Jul 15, 2009 1:38 pm

Welcome Curious -

Thank you for sharing w/us

My neuro has no clue...it is so empowering knowing of people like you are out there waiting, watching, contemplating the CCSVI info and going for it.
Do you have an attentative appt?

The word is spreading...this is exciting
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Postby Sharon » Wed Jul 15, 2009 2:04 pm

Welcome Curious -
As Holly (Peekaboo) said, knowing that there are MS'rs out there lurking on TIMS and that we are spreading the word is great news.

I did inform my neurologist - I sent him Zamboni's 2008 report - he read it and emailed me back wishing me good luck ----I seem him in August for my six month checkup so it will be an interesting appointment :wink: My GP was also informed and she agreed to do any follow-up testing that Dake wanted (she was excited to be involved)......The answer to your question is that you need to have someone for follow-up blood testing -- your choice who that is.

Continue to take charge of your care -


Sharon
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Postby CureIous » Wed Jul 15, 2009 2:32 pm

:)
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Postby Jamie » Wed Jul 15, 2009 2:59 pm

Mel's neuro (not Kerr at Hopkins) said 'I have NO interest in this at all'.

If you have PPO insurance or a GP who will refer HMO then you are set.

PPO can self refer.

Dake is ace with insurance companies and HMO's.

We got ours in network which saved us thousands, just claim that the treatment is only available there and is urgent.

Worked a treat.
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Postby mrhodes40 » Wed Jul 15, 2009 4:03 pm

Hi CureIous,
it is good to know there are so many folks out there partaking of this discussion vicariously. My GP was exactly the same as you in her point of view "This makes so much sense" she said. We are still on that bandwagon. She sees that I look well better than for some years with a fresh bright look. I feel that way too.

My Neuro does not know either.

Glad you are looking at assessment and possibly treatment. The Stanford team is tops.... Actually they are lucky to have Dr Dake at Stanford
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 Loobie » Wed Jul 15, 2009 5:05 pm

CureIous wrote:And if it doesn't work (whatever that encompasses), what the heck, at least I have clear veins!

Cure Ious


That was my exact same attitude. Good luck! You will love everyone there (unless you get the same night nurse I had!)
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Postby CureIous » Wed Jul 15, 2009 8:13 pm

:)
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Postby Loobie » Wed Jul 15, 2009 8:30 pm

CureIous wrote:And besides, I had to come to grips with possibly having a trans-thoracic laminectomy where they collapse a lung to get at your vertebrae so this in all honesty looks like a cake-walk, relatively speaking of course....

Cure Ious


That sounds like a pantload of fun!
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Postby Daisyduck » Wed Jul 15, 2009 9:53 pm

Hey, go for it. I did. No. I do not think this is the time and place for a neurologist who wants to continue barking up his own tree.
Stanford is a superb institution with lots or private grand funding. Dr. Dake even heads up another department, an experimental institute of sorts. I forgot the name..something or other institute. I am soon to go back for my second set of tests and release. Palo Alto/Menlo Park is a pretty place with good restaurants, should you have the time and inclination. I hope to be getting off the Coumadin and Plavix which you will be going on after surgery. Best of luck, Daisyduck
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Postby CureIous » Wed Jul 15, 2009 10:50 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 2:49 pm, edited 1 time in total.
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Postby cheerleader » Thu Jul 16, 2009 6:41 am

CureIous wrote:Thanks Daisy Duck! I'm from the Bay Area so whenever I'm up there I feel right at home, but never set eyes on Stanford. My insurance is a pain though and they just switched to the BS I mean Blue Shield network, which they touted as an advantage "cause ya get more doctors" and I laughed til my sides hurt cause I know they are really doing it to have yet another layer of "NO" and passing the buck. Before, all I needed was a letter of medical necessity, now, with a PPO I need a pre-auth because that's what BS wants, and they aren't even my insurer just a network.

I'm convinced beyond any doubt that MS oops I mean CCVI is a rich people's disease, or it's for poor people, but workings stiffs are pretty well screwed. That's my beef and I'm stickin to it!


ummmm...my husband is Blue Shield, and Dr. Dake worked very hard to get pre-authorization for him, and he and his team did just that- even though Jeff was the first. I don't think we can call any disease a rich person's disease just yet- before checking out our own personal alternatives. It is better to light a candle than curse the dark...especially on the internet :)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby robbie » Thu Jul 16, 2009 9:02 am

Hi cheer how much roughly do you think Dr Dake would make money wise on each plugged jugular he fixes? I know he is only doing this for the advancement of medicine but I was just wondering
Had ms for over 19 years now.
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