Notes from CureIous' at Stanford
Re: Notes from CureIous' at Stanford
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
Re: Notes from CureIous' at Stanford
Yeah, he was the first one I called after discovering, had an ultrasound yesterday, right now a contrast CT of excellent quality, tech said it was lodged in a branch, could go no further, exactly what Dake said yesterday just seeing xrays.magoo wrote:I would sent your scans to Dr. Dake ASAP.
My local doc who is very interested in CCSVI from the git go is the one who did the ct and ut. So yes, Dake will get a copy of the scans. Plus my guy is sending the stuff to another IR at UCLA for his opinion. No insult to Dake at all, but I need someone local sometimes to lean on, long distance calls and emails are fine for routine stuff, but now I have someone intimately familiar with me, and CCSVI. He's already submitted his prior work to ISNVD, hopefully they'll take a look at his abstract. He wants to write up something on this too, because technically it is a de ice failure that should be reported, so others may learn. I'm not against taking the thing out if possible, if it furthers the cause and adds to the knowledge base.
Very very fortunate either way, that this thing just cozy'd up in the perfect spot, no harm no foul. Last night spent 4 hours (eventually gave up) trying to get this CT done. Every professional that hears about it is very interested, not just in the CCSVI part, but the stent relocation too.
Re: Notes from CureIous' at Stanford

Is it a full color CT, C.??
i can show an example of mine if you want...full color CT is really great.
Regards,
Robert
Re: Notes from CureIous' at Stanford
No, you won the $1.6B Power Ball tax free!CureIous wrote:This ct scan should illuminate more, can't wait to share. Doc said I already won the lotto..
I suspect that the endothelial cells were still adhered to the stent and may have acted as a lubricant facilitating its migration through your heart. Still, I imagine that it's like getting shot in the head and finding out that the bullet completely missed the brain.
Re: Notes from CureIous' at Stanford
The CCSVI community will be listening and waiting to hear what the doctors think about your situation. I know I will. I have four stents, two in my jugulars, and all of my check ups have been great. My stents are open and flowing doing their job.
Do they think the accident was the cause, or was it just something that happened randomly? I'm really interested in their thoughts on that.
Thanks for sharing. Dr Dake and the IRs working to help people with "MS" are incredibly wonderful and intelligent people. We all knew there were risks. (Maybe not this one) They changed our lives for the better.
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
Re: Notes from CureIous' at Stanford

Re: Notes from CureIous' at Stanford
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
Re: Notes from CureIous' at Stanford
Keep us updated --- it will be interesting to hear any conclusions as to "why?" from the doctors.
Take care my friend -
Sharon
Re: Notes from CureIous' at Stanford
Sharon
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Re: Notes from CureIous' at Stanford
** no doubt related to Medicare paying next-to-nothing for my yearly stent check-up
Stent in left and right IJVs
SPMS
Copaxone
Former Ampyra User
Regular Botox Bladder Injections
300mg d-Biotin / day
Re: Notes from CureIous' at Stanford
questor wrote:Very sorry to hear about this, perhaps this serves as a good "heads-up" to the rest of us early Stanford pioneers. I was last checked in 2012. I need to find a local vein clinic to check my stents yearly, Dr. Dake's office is inconvenient (and unwilling) to do this. I hope you get quick resolution to this problem.
Considering that I've done plenty of strenuous activity since 09, hard to think it wasn't the whiplash. At least the girls stopped, a miracle in LA. I think the risk in inherent, always has been. Just had a phone call from an IR offering to take it out lol. Sheesh, let a brother catch his breath. Risk/reward all over again. My local guy is going to scan me regularly now, keep an eye on the jug and how it's doing. I went to chat today and got the report, he mentioned about possible internal damage with the stent bumping around inside the heart, that's a thought. Then again if it was implanted then torn from the sides of the ijv... An IVUS would be nice right now.
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Re: Notes from CureIous' at Stanford
This is a scary dark cloud for the original gang, but as Rhonda, Sharon and questor have said, it's important we know this can happen. I agree!!!
So, THANK YOU for coming back online and sharing this experience with us all.
You are truly a mensch. I'm sending all kinds of good wishes, vibes and prayers your way, that you can get this looked at and dealt with, and avoid any more physical/emotional trauma. Yeah, catch your breath!!! And please, keep us all posted.
Really, really glad you're OK, so far and dealing with this in your own inimitable and positive way.
hang in there!!!!
Joan
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
Re: Notes from CureIous' at Stanford
Had another powwow with my local doc here, and will go ahead and do the consult with the IR who is university based and very familiar with both CCSVI, and stent extractions. What the main issue is besides the obvious foreign body being in unwanted location, is that some of the end prongs are protruding into the branch vessels. This may cause any number of problems leading to clot formations.
Hopefully much can be learned here, not just for stenting (or not), but also how the now unstented vein holds up, what the blood flow looks like, are the collaterals filling again, any MS symptoms etc etc.
Will keep ya updated.... No worries, health wise doing great!
Re: Notes from CureIous' at Stanford
Take care, Beth
Re: Notes from CureIous' at Stanford
Take care
Sharon