Thursday, August 26, 2010

20 days til the second round of roto-rootering (and various reports of miscellany)

I have a date for a second venogram. So what do I do in the meantime? Find other ways to occupy my time in a weak attempt to not obsess. Really weak. Mostly unsuccessful. 100% half-assed.

Not to say that I'm being unproductive. Work is good. Recording is good. Social life is good. Husband is awesome (as per usual). Sleep is...sketchy. Not because I'm not tired - my body's tired but my brain won't rest. It's not just here and there. It's every. single. night. Unless I pop a muscle relaxer to quiet the annoying, uncontrollable, involuntary leg twitch. If I do that, I'm sleepy within an hour. But falling asleep isn't the problem - it's staying asleep. And if I get up for a moonlit trip to the toilette then I can't fall back to sleep for at least half an hour.

There are good things - it's good to be busy. But once it starts to wear you down? No bueno. I always feel like I'm waiting for the next event: studio, birthday parties, bridal/baby showers, going to see a band play... it seems never ending. And then there's physical therapy. Kicking my ass twice a week. It's exhausting...

BUT apparently worth it. As any plucky MSer knows, physical therapy is all about measurable improvement.  You're evaluated at the beginning and intermittently throughout your visits to see how you're doing.  At my first visit post-venogram/angioplasty, my therapist used the Berg Balance Scale to assess my risk of falling (it's used a lot for stroke patients and MSers).  The therapist will add up the points that equal your level of function and score your fall risk.  The max number of points you can get is 56, but the goal is 47/56 (I doubt that anyone, save Superman, is a zero fall risk).  So anyway at my first visit, I was a 28/56.  Meh.  After ten visits?  36/56.  Booyah.  Not too shabby.  My therapist said it was "quite good".  I'll take "quite good".  I'm proud to say I'm a moderate fall risk.  Yippee.

I asked an assistant to film me walking while my therapist spotted me.  I was also sporting a very fashionable and attractive gait belt that was strapped around my waist - not at the smallest part right below my rib cage, as Stacy London of What Not to Wear fame suggests- more like right at my belly button.  Made me look stocky.  Hearty. Slightly butch... But I was walking; it wasn't totally natural, kind of stilted and awkward and I need his support; but it looked pretty good.

Why didn't I post it on youtube, you ask?  Well, I didn't want everyone to see the gigantic wedgie my therapist gave me.  He grabbed on to the belt attached to my shorts, not the gait belt.  It was most unattractive.  He gave me a cardboard butt - flat as a board.  Ugh.  I shiver as the image plays over and over in my head.  Needless to say, that video was promptly deleted from my phone as soon as I showed it to my husband and he said, "Um, yeah.  We can get a better video than that." 

There's more news, too.  I made appointments to get a few MRIs.  It's been a long time- 5 years maybe?  Put it this way: they gave me actual films of my last MRI - so it was even before they were putting everything on CD.  I went last Saturday for the first two (brain and cervical spine) and I'm going back this Saturday for the third (thoracic spine).  Got home with my CD and popped it into my computer, just for giggles.  I had no clue what I was looking at but I was certain I saw new lesions.  So that spiraled into a mess of worry.  Three days later I got the radiologist report.  The phrases that kept jumping out at me: 

"No enhancing lesions."
"No active lesions."
"No gadolineum enhancing lesions."

and finally:
"No brain atrophy."

Gadolineum is the dye they use that makes new lesions (new disease activity) pop up like fairy lights decorating your central nervous system as thought it were a Christmas tree.  Well apparently, my brain and spine don't celebrate Christmas.  That's okay, I'll still send them a card.  So, no new disease activity.  Awesome!  And no brain atrophy - which means I don't have any hopeless "black holes" from old disease activity that would actually cause my brain to shrink.  Guess I'm doing somethin' right.  (sigh of relief)

That's it for now.  It's enough, isn't it?

Wednesday, August 4, 2010

"And now you buzz yourself to sleep. You're just a tired honeybee...", Superchunk

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.