CCSVI Tracking - 12 month chart

This is what my symptom report (for some of my most important symptoms) looks like for the 12 months since my liberation:

‘Liberation’ row shows that scientists need more social media literacy

An interesting story that suggests that scientists need to get better at using social media to educate the public about science and educate themselves about trends: Vancouver Sun article.

Melissa's story - almost 10 months

My friend Melissa was spurred to write to me when she realized from my blog that I was approaching one year since being treated.  I asked her for an update that I could share with you and here it is:

Time does fly!!!  This time last year I was anxiously waiting to hear Ted's results with CCSVI.  I had already made up my mind that I was going to try CCSVI to see if it would help the disease which haunted me daily.   It  has been nine months (soon to be ten) since I had my CCSVI treatment.  I have had some significant gains in my balance, fatigue, and endurance.  When the Physiotherapist tested my muscle strength before my Poland procedure  my "bad"  leg tested at 3-/5, now it is at 5/5.  This may vary on weaker days. Now I have a limp and not a leg drag  and only use my cane if I'm very fatigued.   Before the procedure the cane was part of my daily outfit.  I can count on one hand the times I have used my cane since last July!!! I will  share some of my proudest victories with you.  For the first time in eight years I was able to go biking with my daughter, who is eight:  she giggled and gave me pointers, while tears rolled down my eyes uncontrollably.  I have played hop scotch, skipped, and tried ice skating (shuffling).   I'm not saying all these were done with elegance and grace, but they were accomplished!!!  I can stand and  watch her play hockey if there is no seating.  I have seen the  puck go in the net and not have to ask if it was a goal.  I can find her number and know it is her on the ice, where before I needed other parents to point her out.  I have just returned from vacation where I  walked around a cruise ship without my cane.   I was able to walk to dinner every night with heels!!!!   On previous vacations the end of the day left me being pushed to dinner  "with no heels".   I walked through the Halifax Air Port pushing my wheelchair, not "being pushed", which left a confused security officer, who asked, "who needed the  chair? my husband or me !!".   Liberation has not fixed everything but has improved my daily living a good 80  percent.  I still run out of gas before the other mom's but go further before the tank is emptied.   Liberation has brought a smile back to my face and gave me  more quality time with  my Daughter and  Husband. Some may  think this is insignificant but I believe that, "I found the Pot of Gold at the end of the Rainbow!!!!" Melissa Robertson Liberated July 16, 2010

Another procedure, again improvements

John is working with us on the www.newhopeforms.ca tour: John McLaughlin story.

Almost one year

My "liberation anniversary" is only a few days away and it's Easter, so it's a good time to reflect on this past year. After a slow start compared to many others who've been liberated, I've seen the following changes:

Fatigue: this has been my biggest change. About a week after returning from Poland I noticed that I wasn't as fatigued, that special MS fatigue I expect you know well. Sometimes over the next few weeks or so I would say that my MS fatigue was 80% reduced. For me this was the biggest improvement in terms of change to my quality of life.

Mobility: Within a month of the procedure, I stopped using my cane except for longer walks, to provoke sympathy at airports, or when i was reminded by my physiotherapist that I should use it to help me learn how to walk right again. My EDSS has gone from 5.5 to 4.5, but I still have a bad limp and can't go more than a few hundred meters without a rest. I have days when my walking is worse, but sometimes that's caused by too much red wine.

Balance: My balance got better a few weeks after Poland and has stayed much better all along (again, except when I've had too much wine).

Strength: My left side has been weak since early in my MS, but I did see a noticeable improvement a few weeks after the procedure when I did my regular workout. While this varies considerably day-to-day, I would say that it has only improved a little more (if at all) in the months since then.

Bladder function: I was already on Flowmax when I had the procedure and I just stayed on it, it was hard to tell if any improvements were due to the procedure or the medicine. However, I stopped Flowmax a month ago and most of my improvements remain.

And finally, starting a couple of months ago, I began noticing that my left foot wasn't feeling frozen all the time... I finally have warm feet again!

My friend Louis - the good and the bad

I received an e-mail this morning from my friend Louis. He's just returned from having his veins checked at the Eastern Maine Medical Center in Bangor. The good news is that his blood flow appears to be just fine, according to them. The bad news, he informs me, is that by now he has lost pretty well all the improvements he got after his procedure last summer, and he can't blame resteonsis for that.

There is still so much we don't know about MS, and about the liberation treatment and its impacts. Why should some get tremendous, apparently lasting improvements while others get none or get some and lose those gains even without re-stenosis? Why would I keep my improvements after a year (in fact, despite daily ups and downs, getting more improvements), while Louis loses his in a shorter time-span?

My improvements were pretty slow coming compared to many of those telling their stories of big, dramatic improvements on the Internet but, so far, the symptom relief I've won has stayed. Since I would have considered myself lucky if liberation had simply halted or slowed the progression of MS, I feel I've won the big prize... maybe not the lotto jackpot, but a great win, nonetheless.

Are patients "distorting" the scientific process?

A thought-provoking article: Facebook article by Marie

Opposing ideas

An interesting summary of a new debate about the significance of older findings: Macleans article.

CCSVI treatment gets underway in Texas

Note: "CCSVI itself, regardless of MS presence, is known to cause mind impairment", from Baylor College of Medicine information.

How can MS cause CCSVI?

From the CCSVI in Multiple Sclerosis Facebook page: CCSVI in MS notes.