May-Thurner diagnosis during CCSVI procedure

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

May-Thurner diagnosis during CCSVI procedure

Postby krcmum » Mon May 21, 2012 4:31 pm

Can anyone else relate to this topic? I had my first CCSVI procedure last week and was diagnosed with May-Thurner with a 95% compression. We had agreed on no stents before the procedure and he told me he really doesn't like to stent but once he went in and saw the MT he told me that the usual treatment is stenting so I agreed to let him go ahead.
Hoping for follow up care in Canada now I am back home (Vancouver actually)

Can anyone else relate?

Thank you
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Re: May-Thurner diagnosis during CCSVI procedure

Postby Cece » Mon May 21, 2012 6:32 pm

From what I understand, he's right about the usual treatment being stenting, since Mays-Thurner is a compression. You can't balloon a compression and have it last.
It's not something I've had done though!
Hope you are feeling well after the procedure.
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Re: May-Thurner diagnosis during CCSVI procedure

Postby tiltawhirl » Mon May 21, 2012 7:10 pm

All the best as you continue to recover. :)

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...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
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Re: May-Thurner diagnosis during CCSVI procedure

Postby mammananny » Tue May 22, 2012 10:06 am

Amy Gaylord-Preston I have a password issue with TIMS, so I can't comment on this lady's post. If anyone else knows how to contact her, please feel free to give her my contact info.. I had an 85% stenosis of Left Iliac, and have a stent. Much improvement to some issues since the stent.
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Re: May-Thurner diagnosis during CCSVI procedure

Postby msscooter » Tue May 22, 2012 12:31 pm

I also have significant MT. have declined treatment for now as I do not have classic MT symptoms and have one blocked stent elsewhere. follow up with good anti coagulation therapy and monitoring. keep well hydrated and keep moving as much as possible stand up once every 20 minutes if you can. prolonged sitting is not good as we all know. My PT taught me some good new ways to sit as well. the good news is stents do better in high flow areas like illiac. best wishes for full support from your health care providers back home. hope it helps you. let us know how you do.
I have been MSsooter but need to change my name after libration. Don't use a scooter anymore! I am LaFemmeMSketeer!
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Re: May-Thurner diagnosis during CCSVI procedure

Postby drsclafani » Wed May 23, 2012 4:48 am

krcmum wrote:Can anyone else relate to this topic? I had my first CCSVI procedure last week and was diagnosed with May-Thurner with a 95% compression. We had agreed on no stents before the procedure and he told me he really doesn't like to stent but once he went in and saw the MT he told me that the usual treatment is stenting so I agreed to let him go ahead.
Hoping for follow up care in Canada now I am back home (Vancouver actually)

Can anyone else relate?

Thank you


Did you have any signs of MT syndrome? unilateral left leg swelling, deep vein thrombosis of the left leg, thrombphlebitis of the left calf? Compression of the vein is not all that common, certainly less common than the nutcracker syndrome.
what was the rationale for treatment of that iliac vein

i agree that stenting is the treatment of choice for this entity when treatment is appropriate.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: May-Thurner diagnosis during CCSVI procedure

Postby 1eye » Wed May 30, 2012 6:44 am

http://www.thebarrieexaminer.com/Articl ... chive=true

There was a woman from Barrie Ontario, who was quite a cause celebre in 2010. She was air-lifted from there and had her procedure done in New York state. The was probably the largest e-mail campaign that at the time had ever happened, preceding it, happening on at least two continents. I'm not sure if there was any e-mail from Australia. TiMS and Facebook were to blame. (anybody know if this preceded the Arab Spring?). During her procedure, she was diagnosed and treated (stent, I believe)
for May-Thurners.

How she is doing now, I don't know. Her family credited it with saving her life, which was forfeit if she needed unusual rescue, as she had signed a Do Not Resuscitate order. Anybody know how Barb Farrel is?

We still don't really know where she had it done. Three facilities could have done it, but wasn't there only one in operation? I can't remember. It was paid for by an anonymous benefactor.
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