Holly at Stanford

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

Postby mrhodes40 » Fri Jun 05, 2009 7:25 pm

OMG now i am worried that the stents are just a beginning ....it would be awful to have the stents done and then have to have them re-done because the lesions/ulcers would still be activated..


I am not sure what you refer to the idea that germs may be a co factor with stenosis?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby peekaboo » Fri Jun 05, 2009 7:27 pm

i'm not sure either....could it be?
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Postby mrhodes40 » Fri Jun 05, 2009 7:59 pm

I do not know anything certainly; the information on CCSVI/CPn thread is speculative trying to figure out if there might be an association of CCSVI to CPn and if so what might that hypothetically be.

Arterial stenosis often have CPn in them could it be that venous stenosis do? I do not know. ALso is it possible that the MS leison area gets CPn in it after the CCSVI fact? I do not know someone will have to look, but the people who've done well on abx are curious about how that might -hypothetically-associate that is all that thread is about.
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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What kinds of Stents were used to remove the blockage?

Postby merlin26 » Fri Jun 05, 2009 8:05 pm

Did Dr. Dake use bare metal stents to remove the blockage or drug induced stents? Ive been reading up on stents and came across a few articles that linked the drug induced stents to annual deaths of up to 2700 year. They compared drug induced cents to bare metal and foud the death rate with drug induced stents at 11% due to clotting versus bare metal being 0.6. This worries me greatly as the article stated that clotting could occur up to a year or more after. I also checked with my GP and he stated that placing stents in the veins of patients is unheard of and the long term effects of doing this is unknown. He said that veins pump blood slower than arteries and therefore you're more likely to have a clot when placing a stent into a vein than you would an artery. Was this discussed with any of you? Are you at all worried? Please let me know. Thank you.
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Re: What kinds of Stents were used to remove the blockage?

Postby cheerleader » Fri Jun 05, 2009 8:51 pm

merlin26 wrote: I also checked with my GP and he stated that placing stents in the veins of patients is unheard of and the long term effects of doing this is unknown. He said that veins pump blood slower than arteries and therefore you're more likely to have a clot when placing a stent into a vein than you would an artery. Was this discussed with any of you? Are you at all worried? Please let me know. Thank you.


Thanks for the questions and concern, Merlin...actually, venous stents are used with regularity these days, and have better results than arterial, because there is less pressure going thru veins. Clots can be an issue for patients that have blockage due to thrombosis...but the stents Dr. Dake is placing (metal, self expanding) are opening stenosis (narrowing of the vein.)

Stents can be placed for various causes of obstruction, both benign and malignant, throughout the venous system either, primarily, in combination with fibrinolysis, or as adjunct to PTA or surgical intervention. Stent placement is a minimal invasive method associated with a low complication rate and a high clinical success mainly due to differences of the properties and of the pressure between veins and arteries.

link

Dr. Dake placed the very first venous stents back in the 90's and has had very good results. There have not been as many jugular stents placed, and this is a new area of intervention.
My husband considered the risk to his brain and CNS with continued reflux and slowed drainage as more dangerous to his health than the stents.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby skydog » Fri Jun 05, 2009 9:18 pm

What does Dr. Dake prefer medicated or non med? It is my understanding that some patients will scar tissue up and plug a non medicated stent and have follow up with a medicated one placed inside the non med. Now this is usually end game if it works great if not what next ? Peace Mark
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Postby Loobie » Sat Jun 06, 2009 5:18 am

I have a sneaking suspicion that mine will be "plugged" too. Great post Holly. Very informative and makes me want to go tomorrow!
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Postby peekaboo » Sat Jun 06, 2009 7:22 am

i believe the stents used are not medicated. We were immediaely put on heparin, drip all night post op and given plavix post op. He did ask me if i was alergic to metals like nickle because that is what stents are made from. i said that i was known for wearing cheap jewlery with no reaction...he said that qualifies :)
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Postby cheerleader » Sat Jun 06, 2009 7:35 am

peekaboo wrote:i believe the stents used are not medicated. We were immediaely put on heparin, drip all night post op and given plavix post op. He did ask me if i was alergic to metals like nickle because that is what stents are made from. i said that i was known for wearing cheap jewlery with no reaction...he said that qualifies :)


That's right, Holly...and the protocol with the blood thinners was developed to counteract the blockage. Docs have learned so much about how to keep stents patent. You guys will be on plavix (one tablet perday) the rest of your lives. The coumadin can end once the stents have an endothelial layer (around 2 months)

Mark...make a list of all your concerns to bring to Dr. Dake. As Sharon said, he will spend as much time as you need discussing this. And you have no need to have stents placed if you are not comfortable with this...there are other intermediary options. You are the boss.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby skydog » Sat Jun 06, 2009 8:10 am

We are working on my list today. Raining so inside it is. Might rush out and buy some cheap nickel jewelry to sport around for awhile. Seriously this might be a good thing to try since I have never worn any jewelry. Always wanted a ruby ear post. Seems like this wood be a good test. My blood test for metals show fairly high and moderate nickel level. Hope that overall I have lowered them with my daily green smoothies of cilantro, celery, beets, kale, and the only thing not fresh from the garden chlorella. Thanks you guys keep healing holly Mark
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Postby Sharon » Sat Jun 06, 2009 8:11 am

Hi Mark - I think your question about the stents has probably been answered.

I am going to keep reminding anyone who is going to Stanford to start your journal NOW! Start writing down your questions, your concerns, your thoughts. I started a journal the day Jeff went into the hospital - I took that journal with me to the consult with Dr. Dake. Everything I had listed was discussed - nothing was considered trivial. I am now using my journal for the follow-up. Dake wants to learn from us - as I posted on another thread --Dake has started an enormous spreadsheet on his patients - he wants as much information as he can get. As an example - my little finger on my left (weak side) has started to "curl in" a little bit - is this MS?--who knows. I showed it to Dake - he wrote it down for his spreadsheet.

Like Cheer said, Dake is not going to pressure you to go through the procedure. He is going to give you the results of your tests and then tell you how he will fix the blockage. You are in the driver's seat - you decide if you are going for the ride.

Sharon
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Postby skydog » Sat Jun 06, 2009 8:23 am

Great !!! Sharon I have all my med reports for the last several years since first having weird health issues. My left hand goes week when fatigued. Fingers numb alternately from one to the next but rarely all at one time. My whole hand curls inward when I walk. Lots of Subtle things are more pronounced. Peace Mark
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Postby Sharon » Sat Jun 06, 2009 8:53 am

Mark - just another suggestion-----

You said you had copies of your med reports. Is it possible for you to get a CD copy of your last MRI? The reports are good, but a CD of the images is very helpful to Dake.
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Postby catfreak » Sat Jun 06, 2009 9:18 am

Holly,

This is incredible and awesome news. I am going to see my Neuro on the 22nd and I am going to see what he knows about the research and procedures.

You are still in my prayers.

Cat :D
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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby skydog » Sat Jun 06, 2009 10:50 am

Sharon, Yep have my own cd. Will love to have a new audience. Seems I am the only one who likes looking at my brain. Want a copy ? Peace Mark
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