Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

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

Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby vivavie » Thu Feb 16, 2012 11:40 am

Thank you Dania and I wish you the best of luck!
Please keep us informed, by the time you are done I may be ready to do it.
I will think about you and send you good vibes!
When are you scheduled?
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby dania » Thu Feb 16, 2012 11:55 am

vivavie wrote:Thank you Dania and I wish you the best of luck!
Please keep us informed, by the time you are done I may be ready to do it.
I will think about you and send you good vibes!
When are you scheduled?

I am having my first surgery Feb 28. I have to do this I am so disabled now that all 3 veins are blocked. I have a 1-800 number if you want to talk to Tina. She is an American nurse, lives in San Diego works at that hospital, that has MS and it was she who convinced the doctors there of CCSVI and treatment.She was treated by them with angioplasty. So she gets it.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby munchkin » Thu Feb 16, 2012 12:00 pm

Dania

I hope you have excellent results. Please keep us informed about how things are going post-procedure. My thoughts are with you.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby DougL » Thu Feb 16, 2012 12:04 pm

dania wrote:
vivavie wrote:I am having my first surgery Feb 28.


prayers Dania.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby Cece » Thu Feb 16, 2012 1:02 pm

Wow dania big news. What will he do about the problem of there not being enough jugular left at the top of the jugular to attach the graft? Has he said what anticoagulation to use afterwards considering the clotting disorder? It would make me very happy to hear the day after that it has been a total success. This one scares me but I can understand why you're doing it.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby dania » Thu Feb 16, 2012 1:39 pm

I asked the same question. From what I was told from the nurse, who works there, lives In San Diego (also has MS and was treated there Dec 2010 successfully) said I was going to be treated. She said "perhaps" that doctors in the US get sued and this is not on the list of treatments for MS so they are reluctant to do the surgery and they give an excuse not to do it. Easy way out. I thought that how likely is it that the whole vein is bad? And 2cm is not needed to do the patch surgery. He has to do the bypass on the vein with the stent. But only a patch on the other vein. I just got an email from the nurse telling me to stop my Coumadin the Thursaday Feb 23. As to afterwards I will get that info when I am there. Least of my worries. I assume be on Pradaxa of low molecular weight heparin.
I must thank you for posting the videos and info on Excel hospital in Tijuana. It was because of that, I was able to contact the woman who had the vein patch surgery by Dr Hernadaz in Tijuana.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby dania » Thu Feb 16, 2012 1:55 pm

Comment by Carnegie, Deirdre Diana yesterday
Patient treated with"patch surgery"

Someone asked me how I was today , yesterday, fantastic. Every day stronger and able to recapture past activities. Tonight I will going for a light jog with my 11 year old who has never seen me run. A new mother daughter event.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby blossom » Thu Feb 16, 2012 3:28 pm

dania, you certainly have been through it. the very best to you in every way.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby mtf » Fri Feb 17, 2012 6:14 am

Dania,

I wish all the best for you. Please, please...tell us all about it
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby dania » Fri Feb 17, 2012 6:23 am

mtf wrote:Dania,

I wish all the best for you. Please, please...tell us all about it

Not to worry . I will be reporting all. The good and hopefully not the bad.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby Cece » Fri Feb 17, 2012 9:20 am

Glad to have helped. Huh! The patch does not need as much space at the top of the jugular. I know that was said to be needed to attach the graft, but if it is a patch and not a graft, less overlap is needed for attaching? Or as you say he is less likely to get sued so more ok with taking the risks.

On leap day, I hope to see a post from you saying it worked and you've got your improvements back and you feel great.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby Cece » Sun Feb 19, 2012 11:13 am

Here is something I do not like:
https://twitter.com/#!/CMEhospital
CCSVI Liberation not working anymore? NOW a new option, "The Hernandez Procedure" JSA / JSB Jugular surgical bypass. NOT a REDO a SOLUTION!
CCSVI liberation stopped working? The Jugular Surgical Bypass & Plasty is now the future for #MS sufferers
#CCSVI Liberation NOT working any longer? Join the journey to getting free of symptoms don't redo get the "Hernandez's Procedure" JSA JSB!

Sounds like advertising, and not focused specifically on patients who have occluded jugulars who are beyond help from angioplasty.

I had a 'redo' in July of my left jugular. It has lasted. I would have been worse off if I'd jumped from one restenosis to major surgery on the vein.

:(
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby LR1234 » Tue Feb 21, 2012 9:55 am

@Cece I agree worrying


The issue is with draining the brain yes?....I have not grown any collaterals on the side of the occluded jugular in 2 years which is why I think I am having issues.
I am tempted to just get the whole vein removed.
Maybe my body will then notice that the vein has gone and grow some collaterals!
Has anyone else not grown new collaterals?
I wonder if there is any other way to drain the brain other that via the jugulars??? Can they create another drain into another vein with a shunt or something?

I think we might have to accept that a damaged vein is damaged for good.

we will see I suppose.....I so hope it works for you Dania....If it does then I would seriously consider being treated again x
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby PointsNorth » Tue Feb 21, 2012 4:33 pm

Dania, you're a trooper and then some.

Sending positive vibes from the Pacific Northwest!

PN
Albany 2010. Brooklyn 2011
Calcitriol+D3 2013-
Hurry up and wait.
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Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Postby HappyPoet » Tue Feb 21, 2012 6:27 pm

Best wishes, Dania!
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