Monday, May 9, 2011

Courtney's Liberation Procedure in New York

Well, it's 6pm the night before we fly home, reflecting on our trip to Brooklyn to have Courtney tested and treated for CCSVI.  It's been over a year on the waiting list and a lot of questions and scares in the journey to this point.  Questions and scares that will be there always baring a miraculous and not expected recovery from five + years of confirmed Multiple Sclerosis, and no telling how many more undiagnosed.  Healing, recovering from that kind of damage to the nervous system doesn't happen over night, and in many cases doesn't happen at all.  We have no expectations, only hopes, of some sort of recovery, relief.

What we do have is fight, desire, love and a willingness to do whatever is in our power to stop Courtney from progressing.

72 hours post-procedure there are little signs and hints of improvement, nothing major, and as far as we know could be temporary, coincidence, placebo....could be the beginning of greater relief, more long-term healing and an answer to some of the questions regarding how to manage certain symptoms present in Courtney's MS experience.  There is constant fear that the flow in her veins could become obstructed again at any time, requiring more and perhaps more invasive treatment (stents).  For the time being we're riding the train where it takes us and will make the decisions presented us as they come.

So far, there are a couple of things worth noting regarding Courtney's symptoms.  Her feet are considerably warmer at night, and she has spurts of intense feeling energy (has happened a few times the last couple of days). In addition she has experienced a little less spasticity, and seemingly has more dexterity in her right hand (able to cross her fingers, and point straight with her index finger), although both the spasticity and dexterity issues persist at times.

We had a wonderful trip.  Thank you to everyone who helped make it possible.

The day after we arrived was cold and rainy, so we ended up camping out in the room.  The next dayhowever; after Courtney's ultrasound testing, we took a taxi into Manhattan , visited the Strand Bookstore, then walked (and rolled) 36 blocks up Broadway through Union Square Park, Times Square, grabbing some great pizza from a little hole in the wall joint on 46th St, capping the night with a really funny Broadway show, Book of Mormon.

The following day was procedure day.  Arrived around 10:30, Courtney was done in recovery at 5:30 and we just got her back to the hotel to rest and recover.  The day after we hit the Clinic for a follow up and then I pushed her back to the hotel through Prospect Park and the streets of Park Slope Brooklyn, along the way catching the filming of The Amazing Spiderman.  Sunday we grabbed a cab to Obscura Antiques and Oddities in Manhattan, grabbed some great street-vendor food and met up with Mark "Wheelchair Kamikaze" Stecker and his wonderful wife Karen at the Metropolitan Museum of Art, wheeling through incredible photography, sculpture, and some of the most amazing guitars ever made. Visits from some of Courtney's long lost friends of over 15 years put a great bow on a really great trip to New York.

I hope to be more active in the following weeks, please keep checking in.

Best Wishes,
John & Courtney


  1. Hi John & Courtney

    How are you progressing Courtney? I would be more than interested to hear. I have MS also 26+ years, can't walk very far and no stamina YUK!! you know what I mean. I just watched a TV program on the liberation technique and it has caught my interest. My direct email is if you want to keep we informed I would be grateful.

    Cheers Nick

  2. Hi John and Courtney,

    I was hoping to get in touch with you guys about your blog. My wife is a cancer survivor and I was wondering if I could ask you a quick question. Do you think you could email me when you get a chance? Thanks so much.