CCSVI procedure failed...

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
ricleal
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CCSVI procedure failed...

Post by ricleal » Mon Nov 19, 2018 1:06 pm

Hi All,

I had my CCSVI procedure done in Dayton 2 weeks ago and I haven't experienced any good results from it... In the beginning the headaches were weaker, but now everything got back to the situation it was before...

I was looking at the images again and it looks like I have a stenosis on one of my sigmoid sinus. I saw that when I was reviewing the images with the doctor and he said to go higher than he went, we had to be in an Hospital.

One side:
Image

Vs the other side:
Image

What do you think? Am I getting paranoid?

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Re: CCSVI procedire failed...

Post by ElliotB » Tue Nov 20, 2018 3:54 am

Are you specially trained to read a MRI of this type? If not, you should leave it to the experts (MRIs can be difficult to interpret) and you may want to express your concerns to those involved with the procedure who are trained and get answers from them.

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Re: CCSVI procedire failed...

Post by NHE » Tue Nov 20, 2018 4:33 am

ElliotB wrote:Are you specially trained to read a MRI of this type? If not, you should leave it to the experts (MRIs can be difficult to interpret) and you may want to express your concerns to those involved with the procedure who are trained and get answers from them.
They're not images from an MRI. They're fluoroscope images. The tube seen in the veins is a catheter releasing contrast dye to help visualize the veins. Dye flow should be primarily downstream. However, there is a bit that refluxes upstream which suggests a potential stenosis. Dr. Sclafani would be able to provide a professional evaluation of the images.

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Re: CCSVI procedire failed...

Post by ElliotB » Tue Nov 20, 2018 5:38 am

thanks for that clarification NHE. In any case, IMHO a trained professional should be used to read and evaluate the images and then advise...

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Re: CCSVI procedire failed...

Post by ricleal » Tue Nov 20, 2018 5:53 am

I just posted this hoping that someone knowledgeable would stop by and read this...

I just found strange that in one the images both the sigmoid and transverse sinus are present, on the the other one there's nothing... I wonder how normal this is. Is this because of the way the X-ray was taken?

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Re: CCSVI procedire failed...

Post by jimmylegs » Tue Nov 20, 2018 7:43 am

i have zero input on the images but through my lens, such as it is, i am curious about your serum magnesium status before and after this procedure. it has been more than 5 years since my last posts related to stenosis and magnesium in this topic, but the 'step 1' announcement is still right out front.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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Re: CCSVI procedire failed...

Post by ricleal » Tue Nov 20, 2018 7:47 am

jimmylegs wrote: i am curious about your serum magnesium status before and after this procedure.
The doctor did not do any blood tests :( So I can't comment on that...

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Re: CCSVI procedire failed...

Post by jimmylegs » Tue Nov 20, 2018 9:41 am

unfortunately such precautions remain firmly the patient's responsibility. it's not too late to make sure your day to day nutrient intakes and ongoing status matches those of healthy controls. it would involve a learning curve and some advocating on your own behalf however. not mainstream stuff - so far anyway.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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Re: CCSVI procedure failed...

Post by Cece » Mon Dec 10, 2018 11:29 am

It's possible for the injection of contrast to be powerful enough to make it look like there are collaterals that aren't really there. I can't read the images but they are beautiful images! I am sorry you did not experience improvements. This was nearly a year ago now? If the sinuses pool together, then the flow can go out either side so a blockage there might not be critical as long as both jugular veins are functional.

ricleal
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Re: CCSVI procedure failed...

Post by ricleal » Mon Dec 10, 2018 11:57 am

Cece wrote: This was nearly a year ago now? If the sinuses pool together, then the flow can go out either side so a blockage there might not be critical as long as both jugular veins are functional.
The images were posted in this forum exactly 2 weeks after the procedure.
I did experience some benefits on frequency and intensity of headaches. But the post-procedure medicices (pradaxa, then eliquis and then plavix) caused so much joint pain (hemarthrosis - internal bleeding in the joints) that I had to stop them prematurely (2 weeks rather then 6...). I'm on aspirin (300mg/day) right now and I feel the same or worse than before... I pain on my head is sometimes followed by pain on my IJV. I'm now afraid of having a IJV thrombosis...
My doctor was against this, the insurance refused to pay any post-procedure medication, to be honest I have no idea what to do...

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Re: CCSVI procedure failed...

Post by ElliotB » Mon Dec 10, 2018 5:39 pm

What are your options?

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Re: CCSVI procedure failed...

Post by ricleal » Tue Dec 11, 2018 5:13 am

ElliotB wrote:What are your options?
I'm going to see my doctor today and see if he can refer me to do a echocardiography (echo color doppler). I have no idea how to check the overall condition of the IJVs.

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Re: CCSVI procedure failed...

Post by ElliotB » Tue Dec 11, 2018 8:50 am

Your seem to be following the best and perhaps only course of action available to you at this time. Do you have a medical background?

Just curious, when you say "My doctor was against this" what exactly was the doctor against?

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Re: CCSVI procedure failed...

Post by ricleal » Tue Dec 11, 2018 9:08 am

ElliotB wrote:Your seem to be following the best and perhaps only course of action available to you at this time. Do you have a medical background?
Just curious, when you say "My doctor was against this" what exactly was the doctor against?
I have no medical background (no drug formation). What I know it's what I read in books, pubmed, etc...

He was against the venoplasty. He refused to write prescriptions for any of the medicines post-treatment. I had to buy them without insurance...
Anyway, going to see him in the afternoon.

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Re: CCSVI procedure failed...

Post by ElliotB » Tue Dec 11, 2018 9:17 am

Good luck. Please let us know what happens.

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