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CCSVI Treatment: One year later

Feb 19, 2012 - 1 comments
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ccsvi treatment

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one year

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Pain

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Fibromyalgia

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neuropathy

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brain fog

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dizziness



Has it helped, yes and no. I feel my brain is sharper in that I can concentrate for longer periods of time than before. My over all fatigue is better but not as good as just after the procedure. I have slipped back a bit over the year.

Walking is worse. I am not sure clearing internal jugular blockages and blockages in the Azygos vein has much to do with walking performance. It helped in the beginning a bit, but that could have been a placebo effect. My walking has deteriorated pretty badly. I need a rollater a lot of the time and cannot walk half a mile anymore. I can do 1/4 mile with either the rollater or walking sticks. I lurch to the left and have a left foot that wants to drag.

Balance was good after the procedure but has also gone downhill over the year. I don't have as much dizziness though, just tend to tip to the left. Luckily my new smaller house has lots of walls on the left so I can lean my way were I need to go.

Pain is just as bad if not worse. I think nothing can help the fibromyalgia pain, the muscle spasms and the overall pain. I still take 25 mcg patch of fentanyl every other day, and think its effect has worn off. Tramadol works pretty well for breakthough pain. This is always worse in the winter with the changing weather.

Neuropathic pain is well controlled by gabapentin. I up my dose from 900 mg a day to 1200 when the fronts push through which is worse in the winter. I have regained most of the fine motor control in my hands though after the original numbing back on 08. I still cannot feel normally.

Over all I am in a much better place. I guess accepting the constant deterioration and not beating my self over the head has helped as has moving to a smaller more manageable house.

CCSVI treatment results fall into three categories. Those who are help a lot, those who don't feel much change and those who feel worse. I fall into the middle category.

It was worth the try though. Anything not drug related and relatively safe is fair game for me to try.

I would recommend getting tested for CCSVI and if there are blockages, get them treated! I cannot hurt and is a very safe, painless procedure. Getting excess iron out by proper drainage from the brain might make a big difference for some.

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by doublevision1, Feb 19, 2012
Khiba, I'm really glad you had no complications from venoplasty, but I want to exercise a word of caution.  There are serious risks which I find are often downplayed by advocates of the procedure, and yes it definitely can cause harm.  I know a patient whose venoplasty caused him to immediately have a stroke following the procedure.  The damage of the stroke was far more severe than his MS symptoms were prior to the procedure.  He had no risk factors for stroke,  was otherwise a healthy guy in his 30s, and had received the procedure at a reputable medical facility in the U.S.  He had the Zamboni type procedure, ballooning of veins, no stents involved,  The risk of such an occurrence may be low, but for those who do experience such complications, the results are severe and devastating.  It's not a decision to be made lightly on the assumption that 'it can't hurt.'

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