Just had to share...I converted a local IR to treat me!

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

Just had to share...I converted a local IR to treat me!

Postby gothicrosie » Wed Jul 28, 2010 6:33 pm

I had an appointment with a local FSIR a couple of weeks ago and spent 1.5 hours with him discussing CCSVI. He was not totally convinced after the appointment but told me he would call Dr. Scalfani (because he knew him) and then get back with me.

I discovered he not only spoke with Dr. Scalfani, he went to the CCSVI symposium on Monday.

Well, he called me today, another long conversation, and he said he would treat me! Yippiee...

He is going to try and get insurance authorization and then will call me back to schedule my venoplasty.

happy dance happy dance

I converted another IR for the cause! YAY me! Yay CCSVI liberation fighters!
:)
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Postby Trish317 » Wed Jul 28, 2010 7:08 pm

That's wonderful, Rosie! Congratulations!
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Postby CRHInv » Wed Jul 28, 2010 7:23 pm

Way to go!!!! Good for you!!!
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 prairiegirl » Wed Jul 28, 2010 7:36 pm

:D
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Postby Cece » Wed Jul 28, 2010 7:43 pm

That is wonderful! Well done! And you get to be treated by someone who has at least done some legwork in terms of travelling to the symposium and learning and who is local! As my kids who watch too much Mickey Mouse Clubhouse would say, Hot Dog!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Guider » Wed Jul 28, 2010 7:50 pm

That's great news. So glad for you.

Guider :)
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Postby garyak » Wed Jul 28, 2010 8:30 pm

Tapping into that circle of physicians that know each other is awesome-interesting and great story.
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Postby gothicrosie » Wed Jul 28, 2010 10:50 pm

Hot Digittey dog!!

Oh yeah, totally awesome dude!!!

He is a researcher too, and seems to be interested in obtaining an IRB approval. I will work on convincing him of the merits of that, although I think he has already made a decision to do it. YAY.

I will update all when I am treated and what his decision is...and if he plans to treat others.
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Postby Rose2 » Wed Jul 28, 2010 10:59 pm

Good Work, Rosie!! Very good work!
Can you say if you are in Northern or Southern California?
Happy Dance, Yess!
Rose2 ;)
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Postby NotFound » Wed Jul 28, 2010 11:08 pm

Can you ask how he plans to treat you?

Is he going to be checking veins other than the "Holly Trinity" (2 jugulars + azygos)?

Would he enter through the right femoral or the left? (The left is more difficult, but may reveal other issues, like May-Thurner for example)

Yay to you for converting yet another specialist! Double yay because I am in California too :lol:
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Postby CureIous » Wed Jul 28, 2010 11:25 pm

Normally, one wishes the Dr. finds nothing and all is well.

In the CCSVI world, we congratulate each other on just the opposite, that something is there, which of course means there's something to go after.

You've done yourself and your fellow man a great great service in this, opening up the doors to others thru persistence and determination.

And he knows Dr. Sclafani to boot, sounds win/win to me. Good luck and keep us posted. IR's are great aren't they?

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby gothicrosie » Thu Jul 29, 2010 7:46 am

:) *super big smile*

I am in the sunny land of SoCal.

He mentioned he is considering treating the lower IJVs like the doctor from Kuwait (?-who was at the symposium) with different specialty balloons. He will check the azygos...but we did not fully go into specifics...I think he was super excited about the research possibilities. Once he gets the insurance response we will discuss the treatment options, then I will pass on the details.

:D
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Postby Fernie12 » Thu Jul 29, 2010 8:13 am

So so awesome!!!
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Postby MS_HOPE » Thu Jul 29, 2010 9:59 am

What superb news! You must be elated, to have someone local! Will you say where you live? Thanks!
CCSVI:  Making Sense of MS
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Postby BooBear » Thu Jul 29, 2010 10:35 am

Rosie, this made my day!
Three veins angioplastied.  One renewed life.  
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