Tuesday, September 27, 2011

9 Month Check-in - CCSVI

I had a venoplasty for CCSVI on December 15th of last year and though there were some minor improvements in the first 48 hours, by the time a month had gone by, I had decided that I was one of those 30 or 35 % of patients who get little or no benefit from the procedure.                                                                                 And yet, and yet....a month or so ago it suddenly occurred to me that, unlike every six-month period of my life since 2006, this time I was not looking back and realizing that I was worse physically than I had been a half-year earlier.        

I've never had an MS attack or relapse.  I've never remitted either; since I was diagnosed in 2003, the symptoms have just slowly, steadily crept up on me; it takes a stretch of time to notice something new, because it's all so gradual, so subtle.                                                                                                                                                    But this time, I am not worse; in fact, I'm definitely stronger. I could attribute this to getting more exercise due to my Ness L300 stim device or my own efforts but I'm still largely sedentary, working at a desk most of the day, so it's doubtful that would be enough to do it.                                           
It isn't so much that I've improved...it's more that I'm holding my own. Only once since diagnosis has this happened, and that was during the first couple of years that I was taking LDN (low dose naltrexone) and following the Swank Diet for MS pretty carefully. But for the last five to six years I've had to deal with a twice-a-year, stomach-jolting realization that I'm going downhill.                                                                                                                     
So let me add it up:       
Immediately Better & Stayed Better:
Neck and shoulders - hardly painful at all any more - got a good start after venoplasty and finished that off with some acupuncture this past summer. A big deal to me as I really rely on my arms to stand up and walk and the pain before the CCSVI procedure was pretty terrible, despite loads of physical therapy.
Brain - has definitely been working much better since December, 2010. Right from the start I could read and understand more complicated medical reports and I notice I didn't just give up when it got a little tough to follow something; I stuck with it and ultimately grasped it. That is so much more like my old self.

Stayed the Same:
Energy/Fatigue - I get tired but after all, I'm no kid.  I can still keep going all day long. This hasn't changed much since the dramatic improvement when I started LDN in 2004.
Balance - I'm still as tippy as ever and it is still dangerous to walk in the dark because I rely a lot on visual orientation.
Numbness - I had much less 36-72 hours after venoplasty but it came back and stuck around.  No worse, though, and that's one thing that has always gotten steadily worse in the past.
Foot Drop -  Really, this is the same except that I am experiencing a typical response to the Bioness L300 unit I started using in June--that is, there is a residual memory and sometimes I can pick up the front of my foot and toes even when I'm not wearing the unit. This tends to go away as soon as I notice it, though. Yup, I get it--don't think too much!

Slightly better:
Walking - I take on longer distances now, (again note that I started Bioness L300 unit in June).
Strength - I felt stronger by the end of February but more recent improvements may be due to the L300.
Speed - I pulled these numbers off my personal charts at CCSVI-Tracking.  During the first 4 months after my venoplasty, it took 21-24 seconds to stand, walk 3 meters around something, come back and sit down.  In the 5th - 7th months, that suddenly dropped to 16 or 17 seconds. at 8 months, I was down to 14 seconds. Not dramatic, but heartening for me and that first jump at 5 months couldn't have been related to the L300 because I didn't start that until June 7th and I really hadn't been doing anything else that might have made a difference either.                                                                                                                                              
So as you can see, it all adds up to not much improvement but definitely not backsliding. I'm sure I don't need to tell any of you that If I thought the procedure had just halted progression, I'd be extremely happy!

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