Hi from Jeff, re. my stent treatment at Stanford

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

Postby cheerleader » Wed Jul 08, 2009 8:05 am

Thanks for the encouragement, everyone. What a great group of supporters. I'm heading out for five days to spend some time with my Dad in Florida. May not get on line to check in, since I'm leaving the laptop home...Jeff may or may not post, since he's busy with work and taking care of our son while I'm gone. Know that we're good here...Jeff's still feeling alert and much better, and that this bump in the road will be dealt with in due time. Will be praying for the next group to go thru the Stanford doors...traveling mercies, all.
xoxo,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Wed Jul 08, 2009 8:08 am

Rest take a break and rejuvenate! have a safe trip Cheer you deserve a nice little siesta!
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 Loobie » Wed Jul 08, 2009 9:45 am

Go down there and stay away from the computer for a while! You've been tirelessly pursuing this for all of us for quite some time now. I know you're Wonder Woman, but even she needs a vacation! Seriously, get some rest for body, mind and soul. I hope you have a blast and a great time with your pops. You'll come back loaded for bear and ready for more!
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Postby Needled » Wed Jul 08, 2009 10:27 am

Rest, relax, decompress, have a great visit. You have SO earned it. If you're going to think of this at all, think of how much you've done for so many people in such a short amount of time.
Traveling mercies right back attcha!!!
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Postby peekaboo » Wed Jul 08, 2009 10:38 am

All fo the above :P
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Postby Jamie » Thu Jul 09, 2009 1:40 pm

Enjoy Joan!

None of this would have been possible without you.
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Postby Sharon » Thu Jul 09, 2009 6:16 pm

Enjoy your visit with your father. Hopefully, you will take some time out just for you -- your laptop will not gather dust in such a short time. Travel safely.

Sharon
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Postby Rokkit » Tue Jul 14, 2009 8:47 am

Hey Jeff, I'm a guitar player with weekly obligations. I was wondering if I ended up getting stents, how long do you think it would be before I could stand on my feet playing for an hour or so? I play a fairly heavy electric and the strap across my collar bone area already gets tiresome, so I'm imagining the worst with stents in my neck.

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Postby gibbledygook » Tue Jul 14, 2009 9:36 am

As I was crunching a bowl of cereal yesterday I thought I could feel the stent on my left side. I started wondering if the stenoses have arisen due to the bite of the jaw. Has this occurred to anyone else?
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby LR1234 » Tue Jul 14, 2009 9:46 am

Hey Alex, This was mentioned on another post about CCSVI and connection to jaw problems and removal/growth of wisdom teeth...can't remember where it is though!

L x
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Postby gibbledygook » Tue Jul 14, 2009 10:04 am

Thanks L. I still haven't got the Professor's contact at St Thomas' which is frustrating but I expect he hasn't heard back from them either...
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby daniel » Tue Jul 14, 2009 10:08 am

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Postby cheerleader » Tue Jul 14, 2009 7:51 pm

Rokkit wrote:Hey Jeff, I'm a guitar player with weekly obligations. I was wondering if I ended up getting stents, how long do you think it would be before I could stand on my feet playing for an hour or so? I play a fairly heavy electric and the strap across my collar bone area already gets tiresome, so I'm imagining the worst with stents in my neck.

Rokkit


Hey Rokkit...back home from my trip, and outside with Jeff. He's setting up some outdoor speakers while I post. Asked him what he thought. He said it would ultimately depend if/where your blockage was, but he doesn't have any issues playing keyboards or carrying things, and the arm position you'd be in playing guitar shouldn't be a problem. He thought you might need to take some time off to heal (a few weeks), if you did the procedure...his neck and shoulders were sore for 6 weeks.

Had a good visit with my family, and am glad to be home with my guys in socal. Wow...lots happened in several days. I still can't believe how quickly it's all moving. Jeff goes back next week for a checkup/possible balloon procedure on that slightly narrowed left stent. He still feels great, energetic and upbeat...and that's after taking care of the house and our kid all week while I was gone :)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureOrBust » Wed Jul 15, 2009 2:27 am

cheerleader wrote:Jeff goes back next week for a checkup/possible balloon procedure on that slightly narrowed left stent.
I missed that original post. Sorry.

So, one of Jeffs stents have narrowed after their placement?

Does Dr Drake have any idea what forces were acting on the vein to cause the metal stent (I understand its a mesh, not a solid tube) to become deformed (not knowing the correct terminology)? why / how did this happen and what caused it?

Also, has Dr Dake ever discussed a time line for at what point he can use his simple balloon procedure to prop up a deformed stent, over having to insert a new stent, within the old one?

I really should of being paying attention...
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Postby cheerleader » Wed Jul 15, 2009 6:44 am

Hey cure...
Hard to keep track of it all...Jeff's new endothelial (blood) lining is a bit thick at the base of the left stent. The metal is fine, his blood lining isn't thin enough in one tiny area. Dr. Dake is a perfectionist and wants the blood flow to be perfect...so he's kept Jeff on the blood thinners a bit longer and wants to check the lining again. Because we're close and this isn't a big deal, Jeff's going up again. But it is something to consider with stents...the lining the body makes is what can be a problem.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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