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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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erinc14
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Post by erinc14 »

i had the procedure 4 weeks age with some improvement and for the last 5 days or so the back of my head and neck on the left side feels like it's in a terrible cramp . i keep taking tylonol for a little relief . :( i also have stents . does anyone have this?
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1eye
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Post by 1eye »

I had it 7mo ago and I still get this sometimes. I also get twitchy legs and am still heat sensitive. As far as cold hands, I get those but I also have hot hands sometimes so I figure it all averages out. Headache and that pressure feeling are less if I have had enough exercise lately. I am still on a tightrope as far as exercising enough to cause soreness, but I figure I am slowly building muscle mass I haven't had for years.

An example: in 2004 I was fitted for a LFO using a plaster cast. To my dismay, this mold of the way my leg used to be showed how much muscle I have lost since then. The good news is it also shows I am getting it back. I am not back to my 2004 size yet but it's happening. That's what the exercise is doing for me.

I am also experimenting with a pain pill the shrink recommended instead of acetaminophen #3 (Codeine) which if it works will mean I can also drop Wellbutrin. Don't know the down side of it yet, but I figure the less pills the better. #3 has too much caffeine and codeine is bad for digestion. Rather than playing with fire I prefer to think of it as fine tuning.

No stents, though.
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Nunzio
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Re: question

Post by Nunzio »

erinc14 wrote:i had the procedure 4 weeks age with some improvement and for the last 5 days or so the back of my head and neck on the left side feels like it's in a terrible cramp . i keep taking tylonol for a little relief . :( i also have stents . does anyone have this?
Let the doctor that did the procedure know about this.
He might want you to be checked for possible problems.
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Cece
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Post by Cece »

Did anything happen five days ago, like overstraining your neck? I agree with Nunzio to check with your doctor and get his opinion on what to do. What anticoagulation have you been on? Is your stent on the left side low by the valves or up high?

Options would be to get a doppler ultasound of your neck to check for clotting (any IR can do this as aftercare/follow-up care even in Canada, it does not have to be a CCSVI-specific test) and maybe get a d-dimer test from your regular doctor, which might indicate if clotting is going on.
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