Lucy's Report

Here is the gist of an e-mail that a newly liberated woman sent me:

Hi Ted,

Thank you so much for your email.

I had the CCSVI procedure done in Edinburgh during Easter weekend (just past, 2011).

I can't really say I have noticed many changes myself . . .yet!!. . . , although people are telling me they see changes. Some know I have had it done, others don't. People are telling me I am slurring my words less (this used to get worse the tireder I was). Also, that I am walking better (although it doesn't feel like it!) I also seem to have more stamina and more strength (I have an energetic one year old and I can do more with him and lift and hold him much more than I used to). I can definitely stand for longer than before without sitting down and my knees don't seem as stiff or sore. Don't really know what that is about.

I was really ,really tired after the procedure and this lasted for 6 or 7 days (I just put it down to my body healing). I just wanted to sleep all the time. Not really the MS fatigue wall I would hit thought, more of a heaviness and physical tiredness (like I had just been doing a lot of work).

My husband took video of me doing things before CCSVI like heal to toe, walking, balance on one leg, standing with eyes shut etc. I have not taken another video. I was going to do it again at the one month mark as I thought this would be a better indicator of change.

I am not relapsing just now so the biggest change for me will be seeing how I am doing in a year's time. I am also taking LDN so  I won't really know if changes are due to that or CCSVI. To me though, as long as I stay the same or improve I really do not mind! My main focus is on keeping well not 'proving' CCSVI works. I know some people have has significant immediate changes - I don't seem to be one of them. In saying that I went ot on my tricycle last weekend and althought really tired and wobbly afterwards I did over a mile and a half - first time in 3 years!

My biggest symptoms before were fatigue, balance, poor walking distance and difficultly writing (I am left handed). Everything else (bladder, numbness and tinging, cold hands and feet) were pretty quiet just now and not at all as poor as they have been.

My left leg, side really, was always weaker and the 'cuff' that seemed to be around my leg disappeared or almost went but now it is back. I want to go for a walk to see how far I can go but I have been really tired until now. I aim to go at the weekend if my energy is up to it. I will do this with my walking sticks as my 'arm' usually do most of my walking!

I am so encouraged to read that you saw changes a while after the op. It was 20 years after my first  episode so it makes sense it may take time for my body to heal. I asked the surgeon how long I had had blocked veins (azygos, right and left jugular and malformed valves and he said probably all my life, probably since birth).

Thank you again for your email. I really appreciate finding out how your are doing after the procedure.

Regards
Lucy