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.
Ocrevus—My Latest Attempt to Stem the Tide
2 weeks ago