Yes, I've been busy as a bee. But there's no buzzing to sleep. I lay down and my mind keeps working - sometimes for hours (and the annoying leg twitch is back. boooo. Zanaflex seems to be the only thing that helps). Why? I'm working full time, in the studio with the band, going to physical therapy twice a week (and various doctor appointments)... then I still have to find time to exercise when I'm not at therapy and cook all of my meals because of this freaking diet. And then there's the other news, too.
My IR attended the CCSVI Symposium hosted by Dr. Salvatore Sclafani at SUNY Downtstate in Brooklyn. A few days later he gave me a call so we could talk about what's next.
"No one's treating intracranially" was the phrase that stuck out the most. Honestly? I'm relieved. I was never quite sure how I felt about a rigid mesh stent permanently in my skull. IF he treats it, he'll use a low profile balloon with a neuro interventional radiologist present (as a team effort). And I say "IF" because there are other issues that need to be addressed first.
At the symposium he also learned that other doctors are treating valve issues at the base of the internal jugular veins. Issues that can cause misleading pictures up higher - possible "slow flow artifact from lower internal jugular disease" (which is what I'm hoping will be all he finds in the second go 'round).
The other news? Whether or not an obvious stenosis is present in the azygous vein, some doctors treat it regardless - they're using the inflated balloon as a diagnostic tool and uncovering "webs" within the vein that can be corrected.
So, I'm going back in for sure. Exactly when is still kind of up in the air. The patient coordinator called to let me know that they're scheduling six weeks out. Damn. Turns out somebody posted his name. I know who did it and those details aren't relevant anymore - the damage has been done. But once said person posted it at least four more people (could be more but that's all I've found so far) posted it, too. They all took it down after I contacted them and asked them to.
He never said it was ok to make his name public. I hope he doesn't get shut down. Wouldn't be the first time that's happened (not with him, but with other doctors). And, I would feel awful because I approached him and he stuck his neck out for me. I've only ever referred people with discretion, upon his request. I have yet to give out his name to anyone on facebook or elsewhere unless they tell me who they've consulted with first and if it's him, then I confirm.
Ok, rant over.
Other news: this morning I met with a neurologist who supports CCSVI (a rare find). I felt like I was cheating on my neurologist of 8 years (who I loved, up until he dismissed CCSVI). I don't plan on quitting him, I just wanted a fresh pair of eyes to look everything over. But anyway, during my neurological exam I took five (baby) steps unassisted, turned around (very slowly) and walked back to the exam table. Impressive. And proof that my legs are less numb? I passed the dull/sharp pin prick test - all except for one stick. yesssss!
He kind of freaked me out though because he said my IR should stay away from the sigmoid sinus and if he does treat it, he should not only do it with a neuro IR present but also a neurosurgeon on standby. Yikes. Geez. Holy Crap. Sounds waaaaaay more serious than I'm comfortable with.
I'm going to get some MRIs soon and put off my last dose of Novantrone until after I have the 2nd venogram.
Two happy milestones in August: the 12th is my 10th wedding anniversary and the 16th marks 4 years in remission thanks to Novantrone. Me and Novantrone have a love/hate relationship. I love remission, but I hate that blue goo and the way it kicks my ass. My and my husband? More like a love/love. It's totally mutual. I do love that boy. Ten years. When did that happen?!
That's the Reader's Digest version. For now, my brain will continue to overheat from too much thinking as I wait for the call with a date for Venogram: The Sequel. Time to think and proceed with caution = good. What I'm actually doing? Obsessing and overthinking = bad.