This Is MS Multiple Sclerosis Community: Knowledge & Support

I sent Dr. Zamboni's letter to the Ontario Paper to this surgeon at Duke--as well as my own letter (which was published) to the Chapel Hill News. Here is his response:

Hi Judi,

Thanks so much for the information.

I have been attempting to bring this idea to Duke since May this year. I took the liberty of forwarding your email in support if this cause. I now have interest from an excellent interventional radiologist here at Duke. I hope we can make this happen here.

There is no reason to delay your treatment in Poland. I would love to hear about the experience, if you would be so kind.

We both hope for a good result,

Eric Mowatt-Larssen, M.D.
Assistant Professor, Phlebology
Duke University Medical Center

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RRMS Diagnosed 1997
My house burned down, now I can see the moon.

Go Judi, Go Judi!!
FANTASTIC work,
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

Judi,
Since I am in NC and have had the procedure, do you think I should write to him too?

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

I left a message at his office offering any assistance. He may be interested in seeing my before and after scans? He's at a conference, so I don't know when or if I'll hear from him, but I'll let you know!

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

I love this good news... keep it coming !!

Not to hijack this thread, but I am in Raleigh, NC. Did you guys/gals have the screening in NC or did you have to go else where? I want to get the test ran but I really want to make sure the person doing the test knows their stuff? it would be a shame if I did have narrowing and it was missed

Thanks,
James

I concur with Joan - "Go Judi, Go!'

Good work!

Talk about grass roots and green shoots... Is it just my ever-hopeful nature? or are things really happening?

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My name is not really Johnson. MSed up since 1993

I think something can always happen when someone takes this type of step. If memory serves, this is EXACTLY what Joan did when she 'snagged' Dake. Just pounded on doors and try to get someone who'd understand to actually READ the stuff! Great Job!

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

James,
I went to Stanford. There is no one here trained to do the scans. Hopefully we can get Duke onboard!!!

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

If you need it I have a contact email for a clinical trial manager at Duke, I am supposed to be in a bone marrow transplant tudy there next summer - which I am hoping CCSVI will eliminate the need for!

I just finished talking with Dr. Mowatt-Larssen!!!!!!!!!! He sounds like a great guy. He knows Dr. Zamboni personally and has a deep respect for him. He has an interventional radiologist interested, Dr. Tony Smith and a neurologist! I told him my story and results. He asked if Dr. Smith could call me, of course I said yes. I told him to call Dr. Dake to discuss this and he was excited by that idea. He thinks this makes sense to him as a Phlebologist and researcher and he wants to get this going at Duke.
Fantastic work Judi!!!!!!!!!!!!!!

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Hey--I've been over in acupuncture land (my other post) the past couple of days and I didn't even know about all this action going on over here in Duke land until I read my private message from Rhonda a minute ago. All I can say is YEAH!! (my email wasn't alerting me of responses to this post).

Rhonda--I had copied one of your posts from the tracking site and forwarded it to Dr. M-W, hoping he would get in touch with you--but you got in touch with him which is great. I thought maybe I was overdoing it, but I think not.

This is all very good news, especially since I saw my GP today, presented her with the CCSVI info., and ask if she'd get me tested. She said no. Not because she wasn't supportive or interested but she felt unable to validate a claim--fraudulent is the term I believe she used.

My next plan of action was to go to the UNC emergency room and yell: "Help, help, I'm having a stroke, I'm having vague neurological symptoms. I'm going numb and it has nothing to do with my MS. Please someone check the oxygen poor blood flowing out of my internal jugular vein and my azygous vein. It feels like they're clogged. Help, please anyone, an interventional radiologist with a dopple MRV or a vascular surgeon with a stent handy, anyone, help, HELP................."

But maybe I won't have to do that after all.

We are lucky to have each other. Judi

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RRMS Diagnosed 1997
My house burned down, now I can see the moon.

Judi,
That is funny, about yelling Help! I just wrote to somebody: I'm faced with recovery from a 15 year ongoing micro-stroke, all the small vessels bleeding throughout the brain, depositing iron and forming MS lesions.

I've got a neruosurgeon at Univ. WA ready to do my 2 mo check-up MRV, just waiting to get Dr Dake's protocol... and he said he could do SWI too so I can see the iron picture. And now Duke is ready to jump in, this is great!

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RRMS '96 SPMS '02 | Dual jugular vein stenosis (CCSVI) | 10/09 3 stents, 1 angioplasty. Details http://healingpowernow.com

Both of you are funny. But why not?

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My name is not really Johnson. MSed up since 1993