This Is MS Multiple Sclerosis Community: Knowledge & Support

CCSVI undertreatment:
not having access to a doctor who will treat CCSVI
testing and diagnosis without treatment
MRV or ultrasound imaging performed incorrectly
missed stenoses in the azygous
missed membranes that are lifted out of the way during cath venogram
diagnosing no ccsvi based on mrv when cath venogram would show ccsvi
missed stenoses near where internal jugular vein meets subclavian vein
missed stenoses due to being among a doctor's first patients
stenosis found but considered too small or minor for ballooning
no anticoagulant prescribed and then having vein clot over
cath venogram done from right instead of left, missing May Thurner syndrome
lack of follow-ups or aftercare
lack of retreatment in the event of restenosis
lack of stenting for stenosis that does not respond to ballooning
venous stents not on the market

CCSVI overtreatment:
a stent if ballooning would work
anticoagulant prescribed if unnecessary
too strong of an anticoagulant prescribed
a too-long stent causing shoulder spinal accessory nerve damage
more stents than needed
"overlapping" stents as someone described, if unneeded or risky
stent migration

I know a lot of this is a judgment call. The doctors don't know, how are we supposed to figure it out? But we are navigating these waters, making big decisions....if you consider yourself to have been under-treated or over-treated, please share your story.

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"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

these lists are extremely subjective.

Undertreatment = not using stents if pt doesn't respond to repeated ballooning? There's a strong argument to say that ANY stenting at this point in time is overtreatment. Period. Migration risks aside, the long term patency data on stents in the next is simply not there, and there's good reason to expect stent failure in the person's lifetime, which would likely be catastrophic. I can completely understand a person's firmly declining stents, even if it means restenosis and relapse (assuming restenosis leads to relapse in the first place).

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dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />