Thursday, June 3, 2010

Challenging Challengers

As much as I love the new Challenger and as much as I am completely convinced, my Dad, if he were still alive, would no doubt already own one (((sniff, sniff))) I will not be owning one anytime soon. Excuse me a moment while I wipe the tears from my eyes. First and foremost I decided against it because of my two growing boys. Not so much for their comfort as for their safety, . . . yeh, . . . Momma likes to go fast.

But alas, this blog is about my CCSVI journey. Perhaps I'll write a book on cars later. I think I'll call it "Angela's 'Guide to Wheelin' and Dealin' - The Fares Avenue Story." Ahhhh, yes! My Dad would be so proud. I get published, I'll dedicate it to him. And I'll have to have my picture on the cover, waving from a 2010 Challenger SRT. A blue one would probably best bring out the color of my eyes. So it's a plan then. Great!
Now back to my story. The three day Memorial Weekend is where I left you, right? It was a phenomenal weekend. Thanks and love to everyone involved. We covered up to Sunday, right? So Monday was more test driving. A Chrysler 300C SRT with a a bigger Hemi than the Challenger??? That was pretty sweet. But besides a little more power we wouldn't really be gaining anything over our current car. And a Buick Enclave? Never even heard of it, but it was pretty much luxury on wheels. Decisions, decisions.
Tuesday is probably what you've come for. THE FOLLOW-UP WITH THE MAVERICK DOC. We leave and Jason says, "Well, that pretty much went just like I thought it would. (long pause) You okay?" I didn't know exactly. Still don't. I felt the urge to be depressed, BUT about what, I wasn't sure. Now three days later I'm still processing what had gone down in that meeting of the minds. Ha! I call it that because in book smarts that Sam Rockwell lookalike may very well be the smartest person I have ever had the privilege of conversing with. Yet Jason and I are smarter when it comes to CCSVI and the impact it will surely have on this uber intelligent man's way of life. There's a storm brewin' Maverick, and it's headed your way!
Don't get me wrong. Pleeeaaase. This doc was compassionate enough to give this hair-brained scheme a look. And after seeing no evidence of anything in the angiogram he'd promised me, he did go ahead and go in thru the veins with a venogram. I sat there smiling at him as he explained what he'd done. Perplexed as to why I'd be smiling at lousy news he eventually asked if I had anything new to report. "Why, yes, I'm glad you asked!" I follow with my having noticed some improvements. Correction. Others having noticed improvements. And Maverick responds, "Well it can't have been anything I did."
Well experts say different dear man. I ask about valves. He says he didn't mess with them. As they are irrelevant anyways. WHAT? Nothing in my body is irrelevant. NOTHING! So I calmly continue with questioning as I do not want to scare off this potential team member. I explain I'm on a list for a study in NewYork and inquire as to whether or not he'd want to know if THEY found anything. Is that a smirk I see? Yes. Yes, it was.
He practically laughs and explains that is exactly why he went ahead with the venogram. He did not think we'd give up easily so he did the venogram to show us beyond a shadow of a doubt that no CCSVI exists. And if it does, at least not in me. Wellllllllll, huh!? So I say, you're absolutely done with me then, are you willing to try and find it in others? "No. (pause) Well, at least not until there's more evidence of its existence," he says. Fine. Then I reference Ms. Gordon's Facebook wall of liberated at over 400 members and ask how many is enough. At this he offers to take a look at things should anything ever be found. But in the same breath he assures us nothing ever will be. A walking talking contradiction, am I right?
"So there'd be no need for you to save us a trip to New York and do a doppler ultrasound here?" I naively ask. Ha! Again, what's sooo funny? I'm considering changing his nickname from Maverick to Chuckles. He says there'd be no need for any further testing as he'd already been on the inside with the "GOLD STANDARD." Whooooooooaaaaa, Nelly! Had he just quoted Zamboni? Scalafani? Had he done his homework? Picking up on this slip of tongue I retort, "You know, Scalafani has even said he'd be willing to talk to 1st time docs." Whoops! Now I'd used the wrong words too, as Maverick's credentials soon followed. And I interrupted the long, impressive list explaining I had no doubt in his skill or ability whatsoever. What I had meant to say was "docs looking for CCSVI for their 1st time."
Whatever. I had lost him. He went on that clearly I was experiencing a relapse in my relapsing-remitting disease. Blah, bla, bla. Jason could tell this blasphemous comment had caused the hairs on the back of my neck to stand up, thus he took over. Jason asked about our traveling to California to take a ride in the Hubbard Foundation's MR machine as it's about as state of the art as is available on this planet and results are read by Haacke himself. Maverick's reply, "I wouldn't waste my money. (pause) But let me know how it goes." No. No. His new nickname should be Contradiction.
It's as if he wants to have missed something, but is too arrogant to admit that it's even possible he could. Another slip of tongue gave us a jewel of hope to walk away with. He had commented that he had even less doubt now about my venous flow as I had possibly the most stunning system of veins out of my brain that he'd ever seen. Huh? I was flustered at the time, but wish I would have had him elaborate a bit on this. Had he been speaking of collaterals? COLLATERALS? COLLATERALS? In this scenario, a whole bunch of collaterals . . . well, this in itself could be CCSVI. Anything causing flow from the brain to slow and/or not return properly to the heart = good news for me. It means there's still fixin' to be done.
If she's feelin' sooo much better why does she care? Huh?! Well, there is that. I should be happy in what I've lucked into I suppose. And I am. I'm very happy. I'm enjoying every second of this 'relapse' or as I've come to call it - PHENOMENON. I had just been hoping he had researched further and would want to go back in or at least look at a few other MSers. I know doubt still have issues. And even the healthiest of us, could always feel better. I'm not money hungry. I'm health hungry. Call it greedy, if you must, but this taste of what could be is DELICIOUS. And, I WANT MORE!
At the very,very, very least I hoped he would have agreed with my stuck leaflet or inverted valve assessment. Some acknowledgement of this theory's possibility would have been such a gift. In Scalafani's paper he spoke of misdiagnosis due to the catheter pressing thru. Whatever, happened, I'm greatful. Most of all to God! Then to my husband, family and friends. Thank you all for your encouragement and inspiration. (And to my older friends for your tolerance of me. Hopefully, it'll pay off soon.)
Anyways, this Sam Rockwell dance party, I fear, just may be over but to Kenny, my favorite father-in-law in the whole wide world, you are right . . . the fat lady ain't singin' yet. Ha! I have been dancin' a little more though!


  1. IMHO
    This doc knows nothing although he may sound like it. Unless you have been misdiagnosed I would seek a more experienced doctor. Like Dr. Scalafani!! I bet YOU DO HAVE CCSVI. It's worth a go don't you think? Good luck in you future endeavours :)

  2. Ang, after reading your story here today, I am not sure I am ready to meet head on with my Radiologist. My doctor callec me yesterday, as you saw in my post, and he is setting up the MRV for me. THis is what the doctor whom I have an appoinment with in August asked for if possible BEFORE I come to see him. But now I am reading all this and after chatting with one of our fellow MS'ers I am unsure that this test will even benefit me. I would love advise from everyone and anyone. I am to take the protocols with me to the radiologist...So which ones do I take exactally? Should I go back to the doctor and ask him about the veinagram...or do the MRV first them ask him about this next test? OMG He is such a wonderful doctor, and so excited by Dr. Zanboni's work, it was so exciting to be in this mans presence. Then when he called me yesterday, several times, he said, "This will be a learning process for all three of us" But he also said, "it will be very exciting time for us too" So, tips, suggestions, what do I do? PLEASE.....anyone who reads Ang's blog and my post, message me with help.
    Like you Ang, I am hoping that this doc will help many more of you. I already told him there is a line formed behind me :)))
    May God Bless each of us and the few doctors that are willing to help us.... God gave them a gift and there are a few that still live by their creed. Thankfully!
    Love you all and all the hard work we are all doing.

  3. Angela, this is a great read. I'm adding your blog to

    I have great faith in your Liberation and eventual real liberation to come.

    :) will write you over on facebook.

    Judy (maryland usa ms ccsvi group)

  4. Sorry, ladies. I've had sooo much going on lately. Judy you can post me anywhere. Sherry - How'd things go? And Shirley, yes. I'm waiting on Sclafani. Hope everyone is well. Oh and I just posted again. Been on hiatus a while, A