CCSVI Procedure - What to do

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

CCSVI Procedure - What to do

Postby Jemappellesophia » Fri May 20, 2011 3:25 am

I has the procedure 2 weeks ago and have not seen much benefit at all. In fact I have become worse. I am 28 years old and the nerve pain I have had has elevated. Nerve pain medication - Lyrica has not done much at all.
I have pain through my hands and feet. Mainly through my feet.

I had another ultrasound done on my jugulars and it has shown that I have restenose and my valves have also become inverted again.

Question is - do I wait to have the procedure done again? I am booked in next Thursday.

Has anyone ever had elevated nerve pain from the procedure?

What could cause this?

I know that ccsvi might not work for some of us but I didn't expect my symptoms to be elevated or restenose in two weeks.

Advice anyone?

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Postby 1eye » Fri May 20, 2011 4:06 am

Who are you asking this question of? There are physicians on this forum who may respond to your questions, but they are not here to give free medical advice, rather to educate, I think. Advice at least from people like me is free and not worth much more than the price most of the time. I am amazed that you have had such fast response. Where are you being treated?
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Postby jimmylegs » Fri May 20, 2011 4:44 am

sophia, have you already addressed all the known nutritional deficiencies seen in ms patients?

many of the nutrients that are low in ms patients are important for vascular health. having low levels is pretty common in places where ms incidence is high. deficiencies can involve sensations of pain.

if you have not seen improvement from the first invasive procedure, perhaps a little bloodwork could be illuminating.

fyi known problems with ms nutrition include vit d3, zinc, magnesium, b12, selenium, vitamin e, uric acid. at a bare minimum the first three would be a great starting point.

vitamin d3 and magnesium deficiencies are particularly known to cause pain (bone and muscle).

if you decide to ask for tests feel free to ask me questions. be aware that in general, poor nutrient levels seen in ms patients still fall within the 'normal range'. please don't believe that normal = healthy. the term normal is a dangerous security blanket term which actually includes a lot of sick people. i can tell you target values seen in healthy controls.

odd sx? no dx? check w/ dietitian
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Postby Cece » Fri May 20, 2011 7:30 am

I am sorry to hear this.

If the restenosis made the veins worse than they started, that could be a cause for the elevated nerve pain. Or if the physical stress of the procedure and any travelling set off your MS.

Does your IR plan to do anything different than he did the first time around?

Are you worried about the repeat procedure doing harm to your veins? Do you know what size balloons, etc, were used? If IVUS was used? Were you put on an anticoagulant? Does your IR have much or little experience with CCSVI? Is he working in collaboration with other CCSVI IRs?

These are hard decisions and the IRs are early in the process of learning how best to treat CCSVI and how to have durable best outcomes.
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