This Is MS Multiple Sclerosis Community: Knowledge & Support

coincidentally (?), Jeff's first solo CD was called Liberation...way back in '87.

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

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Thanks for the reminder, Chris...deep breath!
xoxo,
AC

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Cheer,
You are sending Jeff off to a well respected doc. It is that doc who is responsible for this procedure, not you. Trust him, be crazily thankful, and remember that Jeff is in good hands. IT IS GONNA BE AWESOME! Can't wait to hear all about it.
Terry

Cheer this some exciting news to say the least! I will be praying for you, Jeff and Dr. Drake. I cannot wait to hear first hand from someone who has had this done! I have a couple of small questions though. How did you find Dr. drake? and how did you approach him with this? thanks for any info. I am currently looking.

Hey Shannon-
I had been in touch (thru e-mail) with a wonderful doc at Stanford, Dr. John Cooke, regarding his research on the endothelium. When Zamboni's paper came out, I sent it to him and asked for his advice. He referred us to his colleague, Dr. Dake. Dake then "coincidentally" saw Zamboni in London at a vascular symposium, met with him- and believed this was true. The timing seems to be God's providence, because it all happened so quickly.

That said, I believe we need to work hard, and be our own advocates. Look for vascular docs at local universities that specialize in "endovascular procedures" and "investigational radiology." Dr. Dake is a cardiac specialist, but he also is an innovator in endovascular procedures and stents for veins.

I approached the doctors with an informational e-mail and sent the link to Zamboni's research. Now that we have Jeff confirmed with bilateral jugular vein stenosis at Stanford, that info can be used as well, to build the case for CCSVI.

I'm more than willing to proof read or help you write a letter to docs. Send me a PM and we'll get you going. The more research we can compile, the better for everyone.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

THANKS SO MUCH CHEER, AS SOON AS I FIND THE RIGHT DR. I WILL GET ON THIS. Sorry for the cap locks. I am going to look around the internet for Dr.'s in the Houston Medical center. Thanks again!! and good luck to Jeff.

We're going to get more interest at university's than commercial medical centers- Baylor's got alot going on in endovascular research
Here's the guy and place I'd recommend for you-
Alan B. Lumsden, MB, ChB
Co-Chair, Medical Advisory Board, Endovascular Forum
Chief, Division of Vascular Surgery and Endovascular Therapy
Baylor College of Medicine, Houston, TX
http://www.endovascular.org/about/about ... dvisorID=2

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

very cool thanks cheer and check your pm's!!

Jeff is in such wonderful hands--in a couple of ways! He will do very well I believe it!

Dr Dake is a really special human being; thank God for Dr Dake! His extensive experience means you could not have hoped to find better for Jeff unless you flew to Italy.

Your work and research has paid off Cheer, it is time to turn it over....

Turning it over is never easy for a control freak, but apparently this is the lesson for me. I had a girlfriend explain it this way at a water park, as I stood at the top of a crazy slide...

"Going down a waterslide is really fun. Kids love them, but adults-not so much. Kids just let go, let the slide take them every which way, thru all the twists and turns, and they have a blast. They come out the end laughing! Most adults don't enjoy water slides because they try to anticipate each turn, and end up hurting themselves. Better to just let go, release all the tension, let the slide do the work, and enjoy."
Good advice....and I'm still trying not to try
AC

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

So, true!!.......You have been a strong advocate for Jeff's care. Be at peace with all your efforts. You have placed Jeff in a safe place. Tomorrow will be a long day for all of us as we wait to here from you.

Here we gooooo!!! Whhheeeeeeee!!!!!

A little serenity prayer might be in order even though this is MSA, not AA!!

All together now:

God grant me the serenity to accept the things I cannot change,
THE COURAGE TO CHANGE THE THINGS THAT I CAN,
and the wisdom to know the difference.

Cheer, I'd say you've done one heck of a job changing the things you can. Close your eyes, sit back in a big puffy chair and realize that although this research may have made it's way on here eventually, you pulled it forward and said "this makes sense!" and it may change many lives in a very profound way (this year's first understatement I hope). Now we wait and see. Not a single one of us would have probably heard this from one of our neurologists until it was firmly in the camp of proven fact. Let's hope it ends up in that pile!! No matter what happens out of this, you've put forth more effort for our sick butts than we'll probably ever know and I totally and completely appreciate it and I know I'm not alone there. Dr. Dake was right when he told Jeff he married well

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Thanks Cheer !!! Thank you Everyone for standing by their mate, friend or relation. This is history in the making. Now Cheer sit back and let it flow... Pun intended. Peace and Health Mark

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Plant a BIG Garden Live in the Moment