Oh, Radeck?

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

Postby Algis » Thu Nov 26, 2009 11:04 pm

Sure; all the best to you. So darn unlucky...
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Thank You Radeck

Postby Ruthless67 » Fri Nov 27, 2009 1:38 am

I am blown away by what has happened to you, and so very, very sorry. Like everyone here, my personal hopes are that everyone comes through this with positive results. But there has to be some one to go first, the pioneers like yourself, if research is to go forward. Thank you Redeck for what you put on the line. I appreciate it, I have learned from. it, I will proceed with caution. I’m sure this will draw needed attention to make this procedure safer for those that come after you.
I remember from your earlier posts that you weren’t too keen on the stints, you tended to lien more toward ballooning. And you seemed to have had a 6th sense or premonition, or what ever you might call it about this.
Given that Z's patients do quite well at least until the narrowing gets worse again, and that I only had this since 11 months and am at least somewhat stable since 3 months, I would therefore not mind if I "only" got ballooned for now.” also “I'm probably thinking about it too much, as I always do.”
You were obviously right to have had concerns; and I’m so sorry again for what you are now going through. Please heal and get as strong as you can for your loved ones; they need you and we need you.
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Postby CureIous » Fri Nov 27, 2009 2:47 am

Hi Rad, so very sorry for all these troubles my goodness you've had a tough go of it. Just got back from TDay and now this and was wondering why you hadn't reported in. I know Dr. D feels like shit right now, and you feel much worse. We are all pulling for you and look forward to hearing a full report but please, don't worry about doing your progress thread til later okay? :)

You do what you gotta do and we'll be here when you are able and ready. I promise we won't relocate while your gone!

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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stents migration

Postby GiCi » Fri Nov 27, 2009 5:19 am

I am very sorry to hear of your misadventure, which is to be considered a possible complication of the procedure of placing stents in the jugular veins. The concerns that Zamboni expressed in this matter are known and I do not think that the level at which the stents are placed (near the skull or lower down) is determinant: a dislodgement is in theory always possible in the early stages.

I would like to reassure you regarding the consequences of the open-heart surgery you underwent. In order to retrieve the stent only the right atrium was entered, which is not a pumping chamber, therefore the function of your heart muscle will not be compromised. In addition the stent floating inside your heart before surgery will not have caused any damage to the walls or valve.
Heparin is used in the post-op as soon as the bleeding from the inside of the chest ceases and it is replaced with coumadin in the second or third day. So you should not worry about the clots in the stents.

I end by wishing you a speedy recovery.
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Postby Loobie » Fri Nov 27, 2009 6:24 am

Awesome of you to post that GiCi.
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Postby Needled » Fri Nov 27, 2009 6:44 am

Radeck, You were the first thought I had when I woke up this morning. I hope you had a restful night.
Gici, really great post for Radeck. Thank you. I'm sure he, as well as the rest of us, appreciates the information and maybe can rest a bit easier with your info.
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Postby CRHInv » Fri Nov 27, 2009 6:54 am

Oh my goodness Radeck. I just got this news. I am so sorry you and your family are going through this. Please know my thoughts are with you. Be strong and heal fast!
Take good care,
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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Postby Lyon » Fri Nov 27, 2009 7:05 am

I don't want to downplay what certainly must have been a terrifying situation as the first to experience it, but at least it sounds like a minor set back and that you haven't experienced any lasting problems.

Heal quickly and completely!
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Postby magoo » Fri Nov 27, 2009 7:36 am

Our thoughts and prayers are with you. Rest and recover. You and your family have been through a lot. I wish we could do more. <hugs>
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 » Fri Nov 27, 2009 7:49 am

Gici, thank you fir the info. I was told by one of the docs on the heart surgery team that the valve between atrium and ventricle didn't have obvious damage, that one couldn't tell for sure what the stent had done while being lodged inside the ventricle to e.g. the spaghetti like structure that holds the valve in place (which was I think close to a 24 hours), and that the main issue down the road could be the scaring tissue from the atrium and heart-lung machine if I ever needed bypass surgery or something similar.

I'm glad I noticed the strange heartbeat Tue morning. Not sure when it would have been discovered otherwise...

I had no idea that Zamboni foresaw this, I knew he was skeptical of the jugular vein stents, but not why.

I wasn't even told I needed stents. But had I heard of this risk, I would have warned others who believed they would get them.
Last edited by radeck on Sat Jan 16, 2010 6:30 pm, edited 1 time in total.
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Postby sewwhat » Fri Nov 27, 2009 11:15 am

So sorry you had to go through all that. Keep healing thoughts in your mind and take it easy.
Wishing you an uneventful speedy recovery. tc
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Postby bluesky63 » Fri Nov 27, 2009 11:20 am

Radeck, what a shock to go in for what seemed like a straightforward procedure and end up with one of the most invasive surgeries you could have! Even if you had known all the details about this in advance, how would you ever have thought it would happen to you?

Be gentle with yourself in your recovery. Trust that your heart will recover, with the best medical care around. I hope the original procedure brings you great results. Sending you all sorts of healing energy and positive wishes -- :-)
Last edited by bluesky63 on Sat Feb 06, 2010 9:45 am, edited 1 time in total.
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Postby patientx » Fri Nov 27, 2009 11:26 am


I just now saw this thread, and I want to wish you a speedy recovery with no lasting side effects. We've had our disagreements here, but I do want to wish you the best in all this.

I must say, given your situation, your posts sound pretty calm. And your updates are appreciated - I don't think I could even think about getting on the computer if I was in the same situation.

You have much going on, so don't feel like you have to respond to this individually.

All the best.
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Postby skydog » Fri Nov 27, 2009 11:38 am

Wow! This is a big shock to us. I am glad you are in the best care possible. You are young strong and healthy. You will recover! I know this in my heart. Lots of Love from Us to You and your beautiful Family. Mark and Brenda
Plant a BIG Garden Live in the Moment
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Postby mrhodes40 » Fri Nov 27, 2009 12:42 pm

I am so sorry that this happened to you!!! I just hate to think of this happening to someone we all know and care about, but I guess that is the way with these complications and side effects of surgery no one expects it. I do not know how common migration would be expected to be in jugular stents. ..I mean is it going to be one in a hundred? Man! Heal well Rad we are all thinking about you and look for your good healing!
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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