Friday, March 18, 2011

Mornings are Great! (kinda)......Before - Part 1

Here are the first in a series of "Before" videos as we document Courtney's CCSVI journey.... instead of posting before/after all at once after everything is said and done we want to document as we go.

Mornings are typically the best in terms of mobility, here are a few videos of Courtney taken just a little while ago:
Walking
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Leg Lifts

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Hands

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Here are a couple of clips documenting spasticity in Courtney's right leg:
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Thursday, March 17, 2011

Finally

September of 2009, I came across a thread on the TIMS forums regarding CCSVI. For the first time since Courtney's diagnosis back in 2006 there was a theory that made sense. Talk about gung-ho..... there was nothing at that time that could stop me from getting my wife tested and treated. I must have emailed/called every Interventional and Neuro Radiologist in Texas trying to find just one doctor who would take this somewhat new CCSVI theory seriously...brick walls everywhere.

We turned to Courtney's General Practitioner, who helped us make the first step when she gave us a prescription for an MRV. All we needed was some pictures, proof of a possible abnormality and THEN maybe we could get an IR to see her. Well, with the help of a friend we met through the TIMS forums who happened to live in our city it worked. Long story short, with Courtney's MRV prescription in hand, we finally found an IR who was willing to review the images and consult with us. The initial MRV showed very heavy narrowing in both of Courtney's jugulars, and the IR did an impromptu ultrasound on her neck, which confirmed they were about 90% below normal in terms of diameter. Instructing Courtney to hold her breath and bare down (valsalva) we watched her jugulars expand to the normal range...then when breathing normal again they narrowed. Because of this little valsalva test, the IR said there could be no obstruction in her veins and would not move forward with a venogram.

Devastation. That's what it felt like that day. 5 months of work to get to that point, with so much evidence that something was wrong and then bam.... a professional, well-respected IR tells us there is no problem with Courtney’s veins. About that time we heard of another doctor who was getting heavily vested in the research and MS community. After reaching out to this doctor and his assistant, getting on their waiting list, and staying patient through IRB denials, alternative clinic locations and the general medical politics that come with a new controversial theory like CCSVI .....we are finally booked to see a wonderful Doctor who is not only taking CCSVI testing and treatment seriously, but is in many ways a pioneer in the area. We could have looked for other Doctors and possibly been able to find treatment before now; however, Courtney has been fairly stable the last year and we wanted to wait for who we thought would be the BEST doctor to see….I feel like we have succeeded in this painfully slow quest.
As excited as I am that we’re finally looking at a real date (only 6 weeks away!), I’m definitely tempering expectations.

Over the next few weeks we’ll be taking many videos to document Courtney’s current level of disability and will be taking many videos after to show what her experience is. Good, bad or indifferent outcome, it feels like we’re doing something. We’re leaning back on one foot, winding up and taking the biggest swing we know how at this beast called MS….I hope we break its fucking nose.

New York, here we come.

Tuesday, March 15, 2011

Insurance Approved

It seems the last big hurdle has been overcome as our Insurance has been approved by the clinic, all that is left to do is schedule the date.....more to come.
-John

Wednesday, March 9, 2011

Moving right along...

After over a year of patiently waiting things are quickly progressing in our efforts to get Courtney tested and potentially treated for CCSVI, aka the Liberation Procedure. I assume at this point if you're reading this blog you know what the Liberation Procedure is; however, for good measure here is a little reference for ya: CCSVI Alliance - you can find just about anything you would want to know through this site, and if you are looking for another great place to donate I highly recommend the CCSVI Alliance.

This is a mixed bag of emotion from my (caregiver, husband, best friend) perspective. I'm excited and hopeful yet extremely cautious because I've seen the emotional stress and depression when hope is shot down. When you have a non-curable disease that is pretty much guaranteed to progress at some unknown rate its emotionally saving to have a glimmer of hope somewhere to hold onto. CCSVI has been that hope for a while now, the ace in the hole that we hope will help us win a hand in this crazy poker game of Multiple Sclerosis.

We hope for even the slightest symptom relief, just being able to cook dinner without getting exhausted would be a big win; however, the big prize is always in the back of my mind. What I wouldn’t give to see Courtney walk again with more ease…

Just waiting on Insurance approval and we’ll be setting the date for the testing/procedure, booking flights and hotel and will officially be set. Thanks so much to all of you who have pitched in with a few dollars here and there to make this trip possible for us. We’re still gladly accepting donations, good thoughts, prayers, positive vibes and anything else you want to send our way.
Much love to you all.
-John