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I had CCSVI just over two weeks ago. I had been doing well, but just under a week after the procedure I had my Solumdrol treatment (3rd time for the monthly series of 3 day in a row treatments), which in the past knocked me down with fatigue for a week to 10 days. Sure enough, a day after the last of the three daily treatments (8 days post CCSVI), I started getting fatigued and some of the numbness tingling I used to get in the legs and arms returned. I was expected/hoping it would go away as I healed from the CCSVI and withdrew from the steroids. I had written in a report that on around the day of that last treatment, before the Solumedrol kicked in to do its dirty stuff, I felt so good I could I could almost forget I had a disease. Well, words spoken too soon. Things have tended down and the numbness has expanded and the neck soreness, which had been going away, is back, came back and was replaced with a feeling of pressure almost on both side of the neck. I have also have some headaches, though they come and go. I am also dealing with Betaserone, and being less than 3 months into it, am dealing with side effects. (Hard to isolation what drug or treatment is causing what!)

I guess my fear is that I may be clotting up. I have been on Pradxa twice a day to prevent it, but who knows? If one is clotting, would they feel it in their neck as a feeling of pressure? A couple of times I felt in a vein above my right ear what feels like a breif sudden pulse of blood flow, like there was a spiget that turned in on an on in half a second. I feel fatigued, though I stood up much of today to attend an air show. I had a moment of total disorentation driving home when I failed to realized I had passed an intersection, then I looked up and saw a road scene I wasn't prepared for and was wondering where I was and what to do! I quickly figured it out, but that was the first event of signifcant disorientation I have exter exprienced! I have diven that path hundreds of times! Still, I don't think my level of cog fog is all that high - I can still call out the value of pi to 10 decimal places: 3.141592654. Yeah!

Anyway, before I get too worried, I thought I would see if others who clotted up were able to tell via neck pain or briefly buldging veins in their heads that someone strange was going on. My other main symptoms are the classic numbness in the legs and arms, but they are different and a bit more encompasing that they were pre-CCSVI.

Still glad I had the procedure and the first week I was doing really well. I could still be coming out of the Solumedrol, and the Betaserone could be impacting things, and my over-exercion and getting hot at the airshow may be compounding things, but I don't any of those would be causing this numbness soreness. Thanks for any information any of you could provide. I may be simply the course of the disease picking up again, but the neck pressure/soreness would not be related. As a side note, the groin site has nearly healed up with most of the bruising gone, but the site of the incision is stil sore to touch, so maybe I can't expect the veins to not feel sore until the groin stops feeing sore.

Sorry for any mispellings as the hands are at 100% efficiency!

Jeff

Jeff, who did your procedure? Are you close enough for an office visit or did you travel for treatment? First thing is to check in with the doctor who did your procedure and see what he thinks. Second thing is that even if you travelled, you can get a local doppler ultrasound done at any local clinic that performs them. If a clot is present, the vein loses its compressibility, and the doctor does not have to be knowledgeable about CCSVI to identify this.

I think it's better to get checked out than to try and figure it out on your own. I had a sore left jugular that stayed sore for over a month after my first procedure, even after my right jugular was all better after a week. It scared me, I got it checked out at a month post-procedure, and it was fine.

I've had cogfog disorientation and that's a kick in the pants. Take care...it's not something you want happening while driving!

I was just reading Dr. Ferral's recent study, and only 3 out of about 100 patients experienced thrombosis, so the odds of thrombosis might be around 3%. One thing to think about is if you've ever had any indication that you might have a clotting disorder, which could raise the odds of thrombosis.

Keep us posted. With luck this is just post-CCSVI jitters. I remember being told that it was like taking two steps forward, one step back, for recovery after the treatment.

Jeff, if you don't have an u/s done by a provider ask the tech how much of the vein is patent. Here in Manitoba, Canada the u/s techs are not reporting anything unseen before, which is everything. They are saying a vein is patent even when it is partially occluded. This can mean the diifference between losing the vein and having the vein saved.