MY BI-LATERAL VEIN BYPASS SURGERY

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

MY BI-LATERAL VEIN BYPASS SURGERY

Postby dania » Tue Mar 06, 2012 2:46 pm

On February 29 I had Bi-lateral vein bypass surgery done in Tijuana Mexico, by Dr Hernandaz cardiothorassic surgeon. He has done this operation many times, but I was the first MS patient he did. It was a 5 hour operation. Not exactly a picnic. But I am so happy he was able to do it and it is done. I had a team of 6 doctors looking after me. I was picked up at the San Diego airport and was at the hospital 20 minutes later. They did blood tests, chest X ray, ultrasound, CT scan, venogram plus I was examined by a neurologist, who believes in CCSVI, a ophthalmologist who took my ocular pressure and did other tests, a internist/cardiologist, an interventional cardiologist did my venogram, and the Dr Hernadaz examined me also. With the venogram he found blood flow above and below the section of vein that was occluded. He called them bumps. He removed my right leg saphoneous vein from the thigh and connected it to the 2 bumps on both jugulars. I spent the night in the ICU. Dr Hernandas order a private nurse to take care of me all night. Had a CT scan Sunday. Dr Hernadaz told me 100% open on the left side and 95% open on the right which there is a small hematoma and once it is gone I should have 100% flow. I was told I had a good size saphoneous vein 9 mm. And with time and use it will get bigger. Plus he told me that the part of the vein that had zero blood flow was a very shriveled up fibrous string. It was dead, no longer patent. Nothing in the world would of gotten thru it and if they had tried the results would have been bleeding. I was retested by all the doctors. As Dr Hernandaz wants do a study on 25 MS patients and publish a paper. I am noticing small changes. My face that has been so red is now a normal colour. I no longer have that internal vibration going on all the time and I can no longer her my loud heartbeat. For once, my body is quiet. I am sleeping so much better as I do not wake up every hour from being overheated. My feeling in my right hand feeling is more normal. Swelling in legs and feet is less. Easier to type. Better core strength. Dr Hernadaza said I should slowly see improvements. I welcome them.
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Re: MY BI-LATERAL VEIN BYPASS SURGERY

Postby CuriousRobot » Tue Mar 06, 2012 3:01 pm

Damn, that's excellent (your improvements & the doctor's ingenuity)! I pray you maintain all benefit!
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Re: MY BI-LATERAL VEIN BYPASS SURGERY

Postby Cece » Tue Mar 06, 2012 3:09 pm

Congrats, dania! I thought it was going to be two procedures? Maybe it was easier than they had expected? I hope you retain improvements and gain more. Do you have follow-up care in place? Anticoagulants? Maybe monthly doppler ultrasounds to check for clotting? Those jugulars are an investment worth protecting. I don't know if I could have been as brave and strong as you have been.
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Re: MY BI-LATERAL VEIN BYPASS SURGERY

Postby dania » Tue Mar 06, 2012 3:38 pm

Cece wrote:Congrats, dania! I thought it was going to be two procedures? Maybe it was easier than they had expected? I hope you retain improvements and gain more. Do you have follow-up care in place? Anticoagulants? Maybe monthly doppler ultrasounds to check for clotting? Those jugulars are an investment worth protecting. I don't know if I could have been as brave and strong as you have been.

Cece you are too funny. Follow up care, here in Quebec Canada? Does not exist or is possible. I am on 10 mg mg Coumadin for life. I maintain an INR of 2.6 on that dose. Well in the therapeutic range. Cannot get an ultrasound done here in Quebec. The Order of Physicians will not allow it.They forbade it. Imagine that! Even when you are going private and paying for it yourself. Disgusting isn't it?
It was suppose to be two separate operations 3 months apart but after he did the first vein which was easy he figured he might as well do the other. Knowing that traveling is difficult for me and it would required him cutting into my leg for the second time.
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Re: MY BI-LATERAL VEIN BYPASS SURGERY

Postby cheerleader » Tue Mar 06, 2012 3:58 pm

you are a pioneer in many, many ways, Dania!
Hoping that this is the beginning of healing and rehabilitation for you.
We're all with you...this has not been easy.
Please keep updating us.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: MY BI-LATERAL VEIN BYPASS SURGERY

Postby MrSuccess » Tue Mar 06, 2012 4:26 pm

will Dr.Hernandez be attending any of the CCSVI conferences we read about?

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Re: MY BI-LATERAL VEIN BYPASS SURGERY

Postby dania » Tue Mar 06, 2012 4:40 pm

MrSuccess wrote:will Dr.Hernandez be attending any of the CCSVI conferences we read about?

MrSuccess

I suggested that to him and he said I am much too old. He is not a spring chicken.
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Re: MY BI-LATERAL VEIN BYPASS SURGERY

Postby eric593 » Tue Mar 06, 2012 7:26 pm

I can't imagine the consideration and contemplation that must have gone into this decision, Dania, not only to undergo such a major procedure with a foreign doctor who had not done this on a PwMS before, but to travel to such a high crime area of the world for it as well. I'm not sure if I would have made the decision. You literally had no safety net if something had gone wrong. That must have weighed on you as well.

This doctor has done many procedures of this type before - do you know if he is published in this area? What other kind of circumstances warranted him doing this procedure? Does he primarily see foreign patients?

If your IJV was patent above and below the occluded area, does that mean that collaterals were functioning to keep the IJV above and below still patent and in good health? Is that why the entire IJV wasn't "shrivelled"?

I was able to receive a doppler in BC when there was a concern that I may have a IJV blockage after CCSVI treatment. It doesn't require any special expertise according to the IR's, a regular, garden variety ultrasound can see if there's a problem.

Please check again with your pcp to ensure that you can't get one. With such a major procedure, you really need to ensure that you heal well and smoothly and you are properly monitored, especially with an underlying blood problem requiring bloodthinners. Phone your MP and MLA if you can't access proper care, you absolutely should be able to have ultrasounds to ensure flow is normal.

I would hate for anything to happen because you don't have proper care, you have been through a lot. I wish you every success in your recovery. I'm very relieved to hear positive early indications and the procedures went well. Were you put under anaesthesia for it?
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Re: MY BI-LATERAL VEIN BYPASS SURGERY

Postby dania » Tue Mar 06, 2012 8:44 pm

eric593 wrote:I can't imagine the consideration and contemplation that must have gone into this decision, Dania, not only to undergo such a major procedure with a foreign doctor who had not done this on a PwMS before, but to travel to such a high crime area of the world for it as well. I'm not sure if I would have made the decision. You literally had no safety net if something had gone wrong. That must have weighed on you as well.

This doctor has done many procedures of this type before - do you know if he is published in this area? What other kind of circumstances warranted him doing this procedure? Does he primarily see foreign patients?

If your IJV was patent above and below the occluded area, does that mean that collaterals were functioning to keep the IJV above and below still patent and in good health? Is that why the entire IJV wasn't "shrivelled"?

I was able to receive a doppler in BC when there was a concern that I may have a IJV blockage after CCSVI treatment. It doesn't require any special expertise according to the IR's, a regular, garden variety ultrasound can see if there's a problem.

Please check again with your pcp to ensure that you can't get one. With such a major procedure, you really need to ensure that you heal well and smoothly and you are properly monitored, especially with an underlying blood problem requiring bloodthinners. Phone your MP and MLA if you can't access proper care, you absolutely should be able to have ultrasounds to ensure flow is normal.

I would hate for anything to happen because you don't have proper care, you have been through a lot. I wish you every success in your recovery. I'm very relieved to hear positive early indications and the procedures went well. Were you put under anaesthesia for it?

I would like to correct you on on thing. Believe or not Tijauna is "Now" a safe place to go. I too thought it was dangerous before I went there.The army came in a few years ago and cleaned up the problem. My female friend that came with me was walking, alone, around at all hours, even after dark. And I am on Coumadin for life and I am checked every few weeks for my INR. I was put under for 5 hours. Dr Hernadaz is an American living in San Diego. He is Caifornia board certified cardiothorassic surgeon. Who has done this operation countless times for other patients, who have blood flow problems but not MS. He fixes blow flow problems. I trust him implicitly.
The reason I did this is if I had not I would of died from this disease. I am not brave, just desperate. I am so glad I went there and would tell anyone that is considering having this done as they now have an occluded vein that they would be in the best possible hands. I consider the healthcare here in Montreal to be third world care compared to what I got in that hospital in Tijuana. I cannot get an ultrasound done here in Quebec. The College of Physicians will not allow it. So no follow up care here.
My veins died where they were occluded.
Last edited by dania on Tue Mar 06, 2012 9:31 pm, edited 1 time in total.
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Re: MY BI-LATERAL VEIN BYPASS SURGERY

Postby blossom » Tue Mar 06, 2012 9:24 pm

dania, so happy for you and to see you posting. you have endured it all. but never backed down when the truth needed told. whether it be the good points or the bad. i admire you for that.

i'm sure your experience and your improvements and testimony will help others in their decisions and give hope to many.
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Re: MY BI-LATERAL VEIN BYPASS SURGERY

Postby 1eye » Wed Mar 07, 2012 8:47 am

I agree with Blossom! You are a champ. (I know, my saying this does not necessarily inspire confidence, but it's what I think.) Once the dust settles and the problems of CCSVI are recognized for the serious slow-acting deadly condition they represent, it may be decided that this is much more frequently the preferred option, rather than trying to only balloon. I wonder if more severe cases of "MS" have similarities that can be traced to a particularly severe kind of occlusion. Do you think your occlusions were related to this underlying blood problem? I also wonder how that guy who had bypass surgery at the Mayo is doing?

Perhaps a study should be done that focuses only on veins of a post-mortem group of "PP" or "SPMS" sufferers, to see if the similarities between them can be sussed out. I think I will get myself an organ donor card. I'm too old for most things, but the more we know...

Anyway, congratulations and I hope you continue to have more and more recovery. I think cases like yours are the ones that will put CCSVI permanently on the map. I know somebody who has given up on angioplasty, on account of having small children and permanent clotting. This at lease gives her a path to follow when the kids are are older, if she's still suffering. What a large number of people you may be helping!

I wish you every success and improving health.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: MY BI-LATERAL VEIN BYPASS SURGERY

Postby DougL » Wed Mar 07, 2012 9:07 am

i have been following your story and i am so happy to hear this.
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Re: MY BI-LATERAL VEIN BYPASS SURGERY

Postby HappyPoet » Wed Mar 07, 2012 10:50 am

dania, you're such an inspiration, and you're giving hope to many people.
So glad you won't need to return for the second bypass surgery.
Thank you so very, very much for sharing your story.
Hoping you have a complete, fast recovery.
You're a truly wonderful person.
Sending +++ thoughts.
Best wishes. :)
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Re: MY BI-LATERAL VEIN BYPASS SURGERY

Postby dania » Wed Mar 07, 2012 11:15 am

1eye wrote:I agree with Blossom! You are a champ. (I know, my saying this does not necessarily inspire confidence, but it's what I think.) Once the dust settles and the problems of CCSVI are recognized for the serious slow-acting deadly condition they represent, it may be decided that this is much more frequently the preferred option, rather than trying to only balloon. I wonder if more severe cases of "MS" have similarities that can be traced to a particularly severe kind of occlusion. Do you think your occlusions were related to this underlying blood problem? I also wonder how that guy who had bypass surgery at the Mayo is doing?

Perhaps a study should be done that focuses only on veins of a post-mortem group of "PP" or "SPMS" sufferers, to see if the similarities between them can be sussed out. I think I will get myself an organ donor card. I'm too old for most things, but the more we know...

Anyway, congratulations and I hope you continue to have more and more recovery. I think cases like yours are the ones that will put CCSVI permanently on the map. I know somebody who has given up on angioplasty, on account of having small children and permanent clotting. This at lease gives her a path to follow when the kids are are older, if she's still suffering. What a large number of people you may be helping!

I wish you every success and improving health.

Mike who had it done at the Mayo developed clots as his doctor took him off anticoagulants. His symptoms returned and he now need another bypass
My occlusion came from having developed scarring after 2 angioplasties. Having zero blood flow for 2 years the vein shriveled up and died.
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Re: MY BI-LATERAL VEIN BYPASS SURGERY

Postby dania » Wed Mar 07, 2012 11:19 am

Hey guys, I am not brave. It was because I was so scared of what I was becoming. I did this out of desperation. Death does not scare me, the way I get there does.
Last edited by dania on Fri Mar 09, 2012 4:36 am, edited 1 time in total.
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