Notes from CureIous' at Stanford

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

Re: Notes from CureIous' at Stanford

Postby magoo » Thu Jan 14, 2016 5:22 pm

I would sent your scans to Dr. Dake ASAP.
Rhonda~
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.
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Re: Notes from CureIous' at Stanford

Postby CureIous » Thu Jan 14, 2016 7:58 pm

magoo wrote:I would sent your scans to Dr. Dake ASAP.

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.

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.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Notes from CureIous' at Stanford

Postby Robnl » Fri Jan 15, 2016 12:19 am

Pffff, i hoped I was wrong...terrible man 8O

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
Last edited by Robnl on Fri Jan 15, 2016 3:15 am, edited 1 time in total.
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Re: Notes from CureIous' at Stanford

Postby NHE » Fri Jan 15, 2016 12:55 am

CureIous wrote:This ct scan should illuminate more, can't wait to share. Doc said I already won the lotto..

No, you won the $1.6B Power Ball tax free!

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.
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Re: Notes from CureIous' at Stanford

Postby magoo » Fri Jan 15, 2016 7:31 am

I am so happy you are okay. This is just astounding. It sounds like your doctor and local IR are really taking this seriously and I hope you get the best care. Are they certain that your health is not in jeopardy?
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.
Rhonda~
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.
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Re: Notes from CureIous' at Stanford

Postby CureIous » Fri Jan 15, 2016 3:05 pm

So fortunate to have a local Dr. familiar with CCSVI, here is the pathology report. Interesting times. Am on Plavix as of now just as a precaution, though not sure it does any good, can't hurt. Doggone that stuff is WAY cheaper now than back in 09! Thoughts? Glad to have this much info quickly that's for sure.

Image
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Notes from CureIous' at Stanford

Postby magoo » Fri Jan 15, 2016 4:18 pm

I'll be the radiologists were scratching their heads!
Rhonda~
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.
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Re: Notes from CureIous' at Stanford

Postby Sharon » Fri Jan 15, 2016 4:25 pm

WOW! So sorry to hear about the relocation of your stent. Glad you are okay Mark and the doctors are on top of your situation. I am just amazed that the stent had not been encapsulated in the tissue of the jugular. Maybe it was your sky diving event ( just kidding).
Keep us updated --- it will be interesting to hear any conclusions as to "why?" from the doctors.
Take care my friend -
Sharon
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Re: Notes from CureIous' at Stanford

Postby Sharon » Fri Jan 15, 2016 4:31 pm

Mark - aside from your roaming stent ... I hope you are going to get someone to pay attention to your whiplash trauma. In my opinion, the mis-alignment in the upper cervical needs to be treated.
Sharon
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Re: Notes from CureIous' at Stanford

Postby Quest56 » Fri Jan 15, 2016 5:35 pm

Very sorry to hear about this, perhaps this serves as a good "heads-up" to the rest of the 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.

** no doubt related to Medicare paying next-to-nothing for my yearly stent check-up
Last edited by Quest56 on Sun Jan 17, 2016 12:07 pm, edited 2 times in total.
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Re: Notes from CureIous' at Stanford

Postby CureIous » Fri Jan 15, 2016 7:01 pm

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.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Notes from CureIous' at Stanford

Postby cheerleader » Fri Jan 15, 2016 8:34 pm

omg....I'm so, so sorry Mark! Sorry for the accident, sorry to see your stent traveling south....EEEK!
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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Notes from CureIous' at Stanford

Postby CureIous » Sun Jan 17, 2016 9:38 am

Thanks everyone for the kind thoughts.

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!
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Notes from CureIous' at Stanford

Postby CRHInv » Sun Jan 17, 2016 10:13 am

Thanks for letting us know. So glad you are feeling well. I will be thinking of you and watching for updates.
Take care, Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Re: Notes from CureIous' at Stanford

Postby Sharon » Sun Jan 17, 2016 11:28 am

Thanks Mark for keeping the "Stanford groupies" updated on your journey.
Take care
Sharon
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