Oh, Radeck?

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

Postby zap » Mon Nov 30, 2009 9:06 am

Yeah, I live in MN and can't afford to fly out to CA all the time, so this is another reason I am starting to lean toward not being stented yet ... although ,,, ugh. If I see blocked jugs on the MRV, it may be hard.
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Postby MamaGirl » Mon Nov 30, 2009 9:18 am

MaggieMae wrote:Reading about Radeck brings one of my biggest fears to the surface. For those of you who live close to Stanford, if a problem such as Jeff's or Radeck's appears, you can take a trip back to see Dr. Dake. But, what if you live in the eastern US as we do. What would you do if you noticed a problem such as Radeck did? Would you call Dr. Dake and hope he could refer you to someone in your area? Just thinking of jumping on a plane with a stent floating in your heart. :cry:
yes, i thought of the same thing ;(
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Postby patientx » Mon Nov 30, 2009 9:21 am

MaggieMae wrote:Reading about Radeck brings one of my biggest fears to the surface. For those of you who live close to Stanford, if a problem such as Jeff's or Radeck's appears, you can take a trip back to see Dr. Dake. But, what if you live in the eastern US as we do. What would you do if you noticed a problem such as Radeck did? Would you call Dr. Dake and hope he could refer you to someone in your area? Just thinking of jumping on a plane with a stent floating in your heart. :cry:


Maggie,

I'm one state away from you, and this has been a concern of mine, if I ever decided to have the surgery. I guess you would need to have a plan in place, including where to go for emergency complications, beforehand. Or better yet, find a vascular surgeon locally who can do the procedure. I don't think in the event of a complication like Radeck's hopping on a plane is really an option (but I could be wrong here).

By the way, at one point I was calling around to various MS centers looking for clinical trials within a reasonable driving distance. I was told they generally like (though this isn't required) the patients to be within 100 miles - the possibility of complications being one reason.
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Postby mormiles » Mon Nov 30, 2009 10:24 am

Oliver, Like everyone who has read about what happened to you, I'm torn between compassion for you and a sobering jolt of un-ease for the implications for my MS/CCSVI patient, my husband. I echo Yannick's sentiments---thank you! Sorry you were "the one." Please take care of yourself and have a smooth and speedy recovery.

THEN, put your armor back on and keep fighting the valiant fight against your MS. Perhaps an appropriate angioplasty is in your future...or not. Just keep fighting. To quote the late Pope John Paul II..."Be not afraid."
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby magoo » Mon Nov 30, 2009 10:25 am

Radeck,
I am hoping for a speedy and happy recovery for you. I can't imagine how hard this has been, but we are all here praying for you. Please stay positive and take it easy. I hope this feeling passes quickly and you are feeling strong soon.
Maggiemae~Since I am in NC and the question of complications was the first thing on my GP's mind and we talked it over with Dr. Dake. He said he would come here if needed. My GP also contacted many local surgeons and discussed my situation. It is a chance we all take.
Best of luck with your tests Rad. I hope they find all is well.
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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Postby radeck » Mon Nov 30, 2009 12:13 pm

I got an EKG, which was abnormal, but apparently normal for someone who has had heart surgery, and a chest X-ray to show that no other stent is in the heart.

MaggieMae, I don't know, but maybe they should consider keeping patients at Stanford for a month or so for observation. The impression I have gotten now is that this is not such a surprising accident, since a stent placed in veins can dislodge because the vein diameter fluctuates, and because they get larger with blood-flow until they hit the heart or make it through into the lung. Two extra risk factors may have been that a) the stents were chosen too small, to reduce the risk of accessory nerve damage from stents that are too large, and possibly b) the slight squishing of my ear-level vein(s) could have been artifacts of blockage downstream. The upper ones were opened by stents first, and the low narrowing (which apparently involved a real stenosis) was opened afterwards, allowing the vein upstream to open up and release the stent. The ear-level vein were the stent is missing is now perfect (Dake showed me during repeat-venography).

Joyce, I don't think you need to worry that Steve's stents will come loose (if that's what you worry about), since they should be covered by new endothelium now.
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Postby Rokkit » Mon Nov 30, 2009 12:50 pm

So Radeck, the EKG apparently means your heart is still getting over the surgery? And is that causing the pounding sensation?
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Postby MaggieMae » Mon Nov 30, 2009 12:50 pm

What would they do if the stent made it to the lung? My mom had blood clots in the lungs and almost died!!

"The ear level vein where the stent is missing is perfect". Are you saying that there is no stent in that vein and it is staying opened?
Last edited by MaggieMae on Mon Nov 30, 2009 1:24 pm, edited 1 time in total.
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Postby CureIous » Mon Nov 30, 2009 1:00 pm

Glad to see you made it out okay without any more stenting issues Oliver. Mark.
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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Postby happy_canuck » Mon Nov 30, 2009 2:07 pm

radeck, I wish you a continued speedy recovery from this truly unfortunate setback. Take care.
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Postby vendredi5h » Mon Nov 30, 2009 3:55 pm

MaggieMae wrote:What would they do if the stent made it to the lung? My mom had blood clots in the lungs and almost died!!
Maggie, I would say that if it's correctly aligned, there shouldn't be much of a problem. It would become a useless pulmonary stent. A clot in the lungs arteries is life threatening but a stent... Compare to get it stuck in the heart, it would probably be a good news.

Well it's the way I see it!

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Postby mrhodes40 » Mon Nov 30, 2009 5:31 pm

Oh my Radeck, I am glad to hear that the open vein is perfect now! That is one piece of good news!

I was thinking about this last night with regards to the order of stents if stents will be used, and postulating that maybe it is impossible to do lower stents then do uppers only if you need them--how would they get past the brand new stent to do the upper if it was still stenosed up there after the lower one was in? Wouldn't the doctor be stuck with his best guess as to whether it was going to be necessary or not before he started stenting? Either that or be forced to try to get insurance to pay for two separate visits to the operating room--with all the attendant risks of a second operation when you discovered at follow up that the first one failed to get the job done and stenosis remains?

Wow, there is a lot to be clarified learned and shared among the doctors doing this work as more people are seen. Maybe two visits will be necessary if a person has upper and lower stenosis...do the lowers, see what you get after time and healing flow wise, then do the upper if it is still poor in a second visit.

I wish I was getting diagnosed with MS next year instead of 18 years ago. As a person healing from accessory nerve complication I am intimately aware of the fun of being learned on, I am sorry for all of us that this is so new.

Thanks Rad for being a pioneer, I am glad that you have something to be glad for with regards to the clear vein.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Lyon » Mon Nov 30, 2009 5:46 pm

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Last edited by Lyon on Thu Nov 24, 2011 10:31 am, edited 1 time in total.
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Postby radeck » Mon Nov 30, 2009 10:23 pm

mrhodes40 wrote:with regards to the order of stents if stents will be used, and postulating that maybe it is impossible to do lower stents then do uppers only if you need them--how would they get past the brand new stent to do the upper if it was still stenosed up there after the lower one was in? Wouldn't the doctor be stuck with his best guess as to whether it was going to be necessary or not before he started stenting? Either that or be forced to try to get insurance to pay for two separate visits to the operating room--with all the attendant risks of a second operation when you discovered at follow up that the first one failed to get the job done and stenosis remains?


It is easier to go with the upper stent through the lower stent than through the unstented vein because the lower stent increases the vein diameter.
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Postby Algis » Tue Dec 01, 2009 4:36 am

@Lyon: this last graphic shows a stent placed within an (artery?) blocked by deposits; it does not really goes this way (correct me when wrong) if your vein look like a pig tail or if the stenosis is the result of a 'pinch' - both cases are much more complicated I guess and straightening a part would lose the other or something like that. Take a garden hose; let the water flow slowly and twist it; here and there... It never really follow te predictions.

@Radeck: glad to read from you.
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