CCSVI: Update (long overdue)

I’m learning to be patient in my healing. When various symptoms (new or old) pop up, it’s easy to be overtaken by fear—fear of restenosis (the re-closing of an open vein), or of an MS exacerbation, or fear of the return of overwhelming fatigue. It’s been three weeks since my [80% blocked] right jugular vein was opened up.  For the first week I had a lot of trouble with my memory and said a lot of  ‘Duh….ummm….wha?’. That has since resolved, thankfully.  Looking back, I’m sure it was from the twilight sleep anesthesia; those drugs used this time acted like a mind eraser! One other weird thing that happened this time that happened last time too: on post-procedure day #2 I woke up with a sneezing fit and continued the whole day with sneezing and sinus problems. That’s it.

The rest of the time since has been good! I’m glad to say that, because it’s often hard for me to accept anything less than FABULOUS! I’m learning to enjoy ‘good enough’. My energy level has not returned to pre-procedure lows.  It’s nice to expend my energy one day and not be couch-bound the next!  Pre-procedures I  used to ration my ‘energy units’ and always held back “in case I get too tired”. Now  I’m learning to live more normally. Or fully. My balance has remained better. One day recently I realized I was shampooing my hair with my eyes closed and not holding onto anything!  Only someone with balance issues can understand that; it’s a huge thing!  I can still walk a straight line and converse without stammering. My husband says my overall improvement now stands at 40%!

Symptoms that have not YET improved or have returned: buzzing in my left foot and decreased sensation in my hands.  Leg spasticity is still fluctuating.

Since I’ve been given a new lease on life, so to speak, I need to commit to consistent exercise and do a better job of maintaining endothelial health.  (endothelium is the lining of the blood vessels; you’ll be seeing more of that phrase in the coming months because Dr. Oz has started to talk about it and he is the Oprah of the medical world!) For exercise, I’ve decided to use the Wii (wii fit). On one forum I heard it called ‘Wii-habilitation’!

As for the endothelial health, I’ll be posting some guidelines that are good for those with health challenges or without. Also, I need to write the new news about ‘vascular access’.


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