I didn't want this thread to die....
No real news other than an e-mail from Megan (Clinical Research Coordinator - Nurse).. They are still waiting on approvals and are shooting for March. They will contact those of us on the list...
Fingers crossed...
Curious how they will address angio. only procedure though? Didn't Dr. Dake and Dr. Simka find certain areas of the IJV's that angio. didn't work and required stents? Meaning they tried angino only and the vein immediately collapsed..
SEE - Dr. Dake's PowerPoint Presentation: CCSVI and Multiple Sclerosis Workshop St Joseph’s Healthcare Hamilton Sunday, February 7, 2010
pg. 50:
Quote:
Constellations of locations and etiologies of venous obstruction in patients with MS
•High Internal Jugular (C1-3 vertebral level)–Often at C1 associated with impingement from anterior aspect of broad-based transverse process –May be a dynamic obstruction related to position (vein stretchedwhen supine with neck extended)–PTA ineffective; stent commonly improves, but outward force may cause pressure injury to CN XI (acccessory nerve) which runs in jugular sheath
•Mid Internal Jugular (middle third between upper and lower segments, C4-6)–Usually secondary to arterial compression from ectatic carotid located medial to vein (side by side) as opposed to anterior/posterior relationship –PTA ineffective; stent placement relieves compression
•Low Internal Jugular (lower third, including valvular segment, C7-T2)–Pancake flattening subjacent to sternocleidomastoid muscles has a dynamic character of unknown etilology or physiological import–2nd loci related to abnormal valve function (stuck or inverted leaflets, stiff/stenosed valve, etc.)–These sites may exist in combination or alone. Valve abnormalities frequently respond tp PTA, with stent placement reserved for persistent obstruction
When I think of this realistically, WOW do the stars have to align for us to get some relief...
1) Study gets approved..
2) We're on the list and don't have to wait forever
3) We get a call and an appointment..
4) Testing positive for CCSVI
5) The stenosis is in the lower internal juglar...
6) PTA may just work in this area
7) Pray that it helps our MS progression and symptoms...
8 ) If the angio works, pray that it does not restenosis...
Not to mention travel expenses plus the BIG unknown variable - medical coverage - will they pay????? ... i
Don't mean to be a downer... but man the odds of all the above aligning really suck. This is what happens when we
think too much...
I'm bumming myself out... sry...
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Damn MS! So I had to re-register. The Hilton is very nice. Not far from the airport. I asked about inclusion and was told the only inclusion is a definitive MS diagnoses. I didn't ask Meg how many were on the list and how many were being allowed in the study. I'll have to ask. And I'll ask her about the billing stuff. Jen 
I'll have my phone within arms reach at all times Cece..
