The Possible Negative Outcome Of Treatment

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

The Possible Negative Outcome Of Treatment

Postby dania » Wed Oct 13, 2010 11:39 am

On June 23 I had the treatment (in Bulgaria) with many improvements. They put in 1 stent and I took anticoagulants. A week later all improvements disappeared and I was more disabled than before I had the procedure. I returned to Bulgaria and had it done again on July 14. They found clots in the stent and all 3 veins were now stenosed more than they were before the first treatment. Plus the vein with the stent was stenosed just past the stent. On Oct 12 in Albany new York a third treatment was attempted but the doctor could not put the catheter into any of the 3 veins. The catheter was bending with each try. All 3 veins are now closed completely. The stent was now funneled at one end.
Knowing what I know now I would not have done the treatment.
There is a need to have this studied.
I do not want to scare people from trying the procedure, but one should be aware that it is not always successful and one can become more disabled.
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Postby Motiak » Wed Oct 13, 2010 11:48 am

Thanks for posting, it's definitely important to see all sides of this. I'm so sorry that things turned out badly for you. I really hope our doctors can come up with some better treatment methods soon down the line because our current methods seem somewhat ineffective with the possibility of worsening and restenosis out there.
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Postby David1949 » Wed Oct 13, 2010 1:20 pm

Dania
I'm very sorry to hear what has happened to you. Whenever we make a decision we cannot tell with certainty what the outcome will be. Sometimes it doesn't work out as we had plannned or hoped. We've probably all had that experience with some decision we made in our life. Then we look back and say; wow that was the worst decision I ever made. I'd never do that again.

For whatever reason, it seems that your body did not adapt to ballooning or stents. But you didn't know that in the beginning. With MS, doing nothing can also be bad. We only have to look at the EDSS chart to see that. So I don't think you made a bad decision. I think you made the best decision you could make based on the information you had at the time. I hope and pray there will soon be methods of correcting the problems you now have.

Thank you for telling us your story. We should all be aware of the possible negative outcomes as well as the positive ones before we decide to get the Liberation treatment, or not.
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Postby dania » Wed Oct 13, 2010 1:24 pm

Hi Dania,
So sorry to hear of your situation.

I think my left vein is now totally closed as well after the clot and treatments I have had. I don't know about the other 2 veins (azygous and right internal jugular) I also have calcification in the azygous which I don't think was present before (but I can't say with absolute certainty that it wasn't).
I just hope they find a way to help you or that your body grows some super collaterals to compensate.

How has your disability increased? Are you still on blood thinners?

I have been on anticoagualants for over 10 years. I have to be on them for life.
I am weaker than ever. Muscle spasms are horrible. They have never been this bad. I was autonomous before this. I am no longer. Can no longer cook, drive, need help bathing. I could go on but I think you get the drift.
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Postby Cece » Wed Oct 13, 2010 2:58 pm

This is so hard to read. I too hope something can be done.
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Postby dania » Wed Oct 13, 2010 9:05 pm

I am so sorry Dania, Like David said you can't feel bad about the decision you made, we are all in a desperate situation and all of us (well most of us) would be willing to try anything if we thought it might help.
Please keep us up to date with how you are doing, I hope things improve for you. I hope your body is able to get some blood flow back...I am sure it will try its best.

Why have you been on blood thinners for 10 years?

Coumadin
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Postby hope410 » Wed Oct 13, 2010 10:57 pm

I'm so sorry you have had to go through this experience Dania and I really hope it turns around soon. The pioneers really take the risks where we don't have the data of risks/benefits to rely on. Of course we have known that other people also have worsened following the treatment and we have the choice to wait until more is known about who is at risk for worsening and not improving from the treatment. But on the other side as other have said, we have a disease that continues to trample across our abilities and systemically do its damage to our nerves. We do know that if we DON'T treat or take chances, then we will definitely get worse. So we suck it up and take some chances in the hopes that this new treatment will help. For many, it seems to, for some, they are not so lucky.

It is a gamble. I'm very sorry that your turn of the dice was not good for you but made your situation worse. I can only hope that as they learn more, you too will be able to be helped.

I hope so. Hang in there. Thanks so much for sharing. We need to keep an open mind and not be blinded by the good stories. We NEED to hear experiences like yours too.
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Postby Neutralis » Thu Oct 14, 2010 5:59 am

I was diagnosed with CCSVI six months before I was diagnosed with definite MS. My left jugular was hypoplastic, while my symptoms involved double vision in extreme left eye movement and diziness. I attempted baloon angioplasty along the whole body of the vein - it required at least six baloons. The jugular stayed open for only two months and then was totally occluded from its middle to its upper part. L'Hermitte's sign appeared some months post occlusion, followed with a new lesion on the upper spinal chord. Angioplasty could not be carried out after the occlusion.

A vein transplant seems the only feasible solution now, and I wonder whether anyone has had a similar case so far.
Tomorrow is yet one more day.
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Postby drsclafani » Thu Oct 14, 2010 6:06 am

dania wrote:
Hi Dania,
So sorry to hear of your situation.

I think my left vein is now totally closed as well after the clot and treatments I have had. I don't know about the other 2 veins (azygous and right internal jugular) I also have calcification in the azygous which I don't think was present before (but I can't say with absolute certainty that it wasn't).
I just hope they find a way to help you or that your body grows some super collaterals to compensate.

How has your disability increased? Are you still on blood thinners?

I have been on anticoagualants for over 10 years. I have to be on them for life.
I am weaker than ever. Muscle spasms are horrible. They have never been this bad. I was autonomous before this. I am no longer. Can no longer cook, drive, need help bathing. I could go on but I think you get the drift.


Why have you been on anticoagulants for over ten years?
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Postby drsclafani » Thu Oct 14, 2010 6:09 am

dania wrote:
I am so sorry Dania, Like David said you can't feel bad about the decision you made, we are all in a desperate situation and all of us (well most of us) would be willing to try anything if we thought it might help.
Please keep us up to date with how you are doing, I hope things improve for you. I hope your body is able to get some blood flow back...I am sure it will try its best.

Why have you been on blood thinners for 10 years?

Coumadin


yes, coumadin would be the medication for anticoagulation long term. My question is that i want to know why you have been on coumadin for ten years. Did you have multiple episodes of blood clots ? are you a clot prone person? Did you have multiple pulmonary emboli? Do you have a heart valve replacement?
or is there another reason for the coumadin
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Postby dania » Thu Oct 14, 2010 6:36 am

drsclafani wrote:
dania wrote:
I am so sorry Dania, Like David said you can't feel bad about the decision you made, we are all in a desperate situation and all of us (well most of us) would be willing to try anything if we thought it might help.
Please keep us up to date with how you are doing, I hope things improve for you. I hope your body is able to get some blood flow back...I am sure it will try its best.

Why have you been on blood thinners for 10 years?

Coumadin


yes, coumadin would be the medication for anticoagulation long term. My question is that i want to know why you have been on coumadin for ten years. Did you have multiple episodes of blood clots ? are you a clot prone person? Did you have multiple pulmonary emboli? Do you have a heart valve replacement?
or is there another reason for the coumadin

I have had 2 Pulmonary embolisms. And I developed a clot in my arm when they put a portocath in my chest for chemo. I was tested and I have Factor V Leiden and Protein C deficiency. Lucky me! I keep saying if I did not have bad luck I would of no luck at all. LOL.
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Postby David1949 » Fri Oct 15, 2010 2:47 pm

Please excuse me if this sounds insensitive, but I think your case should be getting lots of attention. Researchers can learn as much from their negative results as from the positive ones. It seems that some people are prone to adverse reactions to ballooning and/or stents. Since I first read your post I've been thinking that your veins seem to be almost suicidal and are determined to shut themselves off by any means possible. Now maybe we know the reason why. The information you just provided; "I have Factor V Leiden and Protein C deficiency" might serve as a screenng tool. Maybe doctors should check for that before they do angio on anyone. I know that doesn't help you any, but that info might keep other's from suffering similar problems.
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Postby dania » Fri Oct 15, 2010 3:10 pm

I was talking with someone today and who has been in touch with many that have had a negative response but they are not posting their results. They do not have clotting factors. More and more people are restenosing. Zamboni found 50% do. One doctor told me that threading the catheter up veins is not without doing a little damage to the vein. The more this procedure is done the more they will learn. But the good as well as the bad results should be available so people can make the decision as to what to do.
Maybe in the future vein grafting using porcine or bovine veins may be an option. A man that used a vein graft, using a vein from his leg got good results, but in time that vein collapsed. My doctor who performed the first 2 procedures is a cardiologist. He does not think leg veins are a good idea for a vein graft for the neck.
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Postby David1949 » Fri Oct 15, 2010 3:25 pm

Did the doctor who performed the angio know about the previous embolisms or the blood clot? Did he ask about your medical history?

Again I don't mean to sound uncaring about your condition. I sincerely hope that methods will soon be found that will help you. But I also want to see the procedure become safer for everyone. I hope the doctors are learning from the unfortunate outcomes, like the woman who died and the man whose stent migrated and from cases like yours where people became worse after angioplasty.
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Postby ikulo » Fri Oct 15, 2010 3:40 pm

Dania thanks for sharing.

I'm no doctor, but I'm really surprised that testing for Protein C deficiency and Factor V Leiden testing isn't mandatory before venous ballooning and especially stenting. They are disorders that cause venous blood clots! Seems like a no brainer.

Here is more information about Factor V Laiden and Protein C deficiency: http://www.med.illinois.edu/hematology/PtProtC.htm
http://www.med.illinois.edu/hematology/PtFacV2.htm
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