Some Research Suggests CCSVI Treatment Might Improve Symptom

jr5646 · Post by **jr5646** » Mon May 03, 2010 5:32 pm

NO SHIT... get on with it already...... We're suffering here...

LINK

jr5646 · Post by **jr5646** » Mon May 03, 2010 5:52 pm

“We are proceeding very cautiously and slowly with this. It might work or it might be a dead end, but we need to see where the science takes us without risking patient safety,”

This has all been said here before... over and over again... BUT

Let the patient decide if they want to take the risk...

Funny how we can take drugs with risk and its ok, but not THIS...

WHY?

Zamboni has been studying ccsvi for years... Did it take a news story (CTV - nov 2009) to shed light on this possible breakthru and folks are just now getting around to looking at it???

I NEED treated now...

SRY for the anger... I'm just hurting and need to vent...

jackiejay · Post by **jackiejay** » Mon May 03, 2010 6:22 pm

In their testing only 20 out of 40 MS patients had CCSVI....that isn't real promising....is their testing a lot different than Zamboni's?

Cece · Post by **Cece** » Mon May 03, 2010 6:30 pm

In the 'My son's liberation' thread, Jackie posted that her son had a test done elsewhere that had shown severe blockage and then the test at Georgetown showed only minor issues...she speculated that if it weren't for the other location's test he might not have been selected for the Georgetown 20...but he was and they found and fixed some very severe CCSVI issues...so I think once again we have difficulties in the imaging and back to the idea that venogram is the gold standard.

Billmeik · Post by **Billmeik** » Tue May 04, 2010 5:22 am

so they imaged 40 people and only found ccsvi in 20. Really someone should be in charge of challenging the other 20. Feorgetown is operating under a 50% is right assumption that should be challenged. In a way, the 20 negatives are the interesting imaging problems that have come out of this.

Flashover81 · Post by **Flashover81** » Tue May 04, 2010 6:22 am

It seems like they should do a venogram on the negatives (if they want it) to see if it might be a imaging problem....... That would let them know if doppler and the other imaging tests are reliable....

Squibbles · Post by **Squibbles** » Tue May 04, 2010 7:44 am

From personal experience I agree with Flashover81's comment. When I was in Poland a couple of weeks ago, Dr Simka did a Doppler on me and said that there was no problem with my left jugular and only a very small problem with the right jugular but that they would look again under a venogram. After the procedure another doctor (not sure of his name) showed my husband what they had done - angioplasty on both veins - it seems that the right was 50% blocked and the left had a problem with the valve...