Tuesday, October 12, 2010

Steady as she goes

Today is officially one month post 2nd venogram.  Am I walking on water?  No.  Am I walking a little better?  Yes.  Is that the only good news to report?  No!

Am I going to post any more youtube videos? ...eh, probably not. Mostly due to this blog quote I found, "There was one young lady crucialsuz who put up her pre and post treatment videos on youtube (walking in the hallway). One appreciates her candor in putting them up. On her comment she felt there were improvements, but as one person stated they could not see any appreciable difference between the two videos (in my opinion I have to agree). But the true believers would have none of it, they were happy to see her “improvement” and chose to insult the skeptic. On the whole sad but not unexpected."

I am certainly not trying to feed the hype machine or give anyone false expectations. So screw it, no more videos. The naysayers can "nay" all they want and I'll continue to "yea" quietly and avoid youtube. So, phhhhhhtht on you.  And by the way: I can use "One" instead of "I" to make myself sound more credible, too.  I'm also really good at saying things "passive aggressively" in "quotations" to connote "sarcasm".  What a boner.

Now back to the good stuff.  First and foremost: I am sleeping through the night - or if I need to get up it's only been once a night (and that's maybe once a week on average).  Getting up to pee 2, 3, 4, sometimes 5 times a night can really edit a good night's sleep into neat little (pointless) bites of time.  Not exactly a good way to feel rested.  But no more!  And I can have a little drink of some liquid (alcoholic or not) after 8 pm and not have to worry about that affecting my sleep habits.  What a relief. 

And my "jimmy legs" as a friend calls it-  the infuriating, interrupting, involuntary evening leg twitch is not completely gone, but the frequency is waaay, waaay down: about 20 times in a 6 hour period as opposed to countless twitches every 1 to 2 minutes for hours on end. That also cut into my precious sleep time.  Now?  Not so much.

Spasticity is still better too, though not completely resolved.

I can wiggle my toes!  Crazy.

Am I thankful for this stuff? 1000%.  Do I want more?  Um, yeah.  Who wouldn't. And I think it's safe to call these improvements.  Without quotation marks.

I didn't have any expectations this time around.  Honestly.  I didn't want the weight of disappointment on my chest that made me such a miserable person to be around.  But hope has its way of gnawing a little space in your heart.  Of course I get frustrated.  It's just no so all-consuming this time around. 

So what now?  Oh, this is the part that sucks.  Physical therapy.  Six days a week - in the office twice a week and then a routine at home the other four.  It's hard.  Really effing hard.  Sometimes I'm concentrating so much that I forget to breathe.  Kind of an important thing to do when you're exercising, no?  I feel like I'm banging my head against a wall - I don't know why I think this should be easier.  Then I remember what my physical therapist said to me, "I've never seen any patient with MS show this kind of improvement."  Of course, he's seen people on their way back from exacerbations regain functions; that's just how MS works.  But I've been using a walker for 5 years and a scooter (outside of the house) for 3.  That's a pretty low place of function to start from.

Yes, I'm still using my walker.  And the scooter, too.  But I have to believe that all of this work is for something.  That thought, naturally, isn't from the same part of my brain that thinks MS is a punishment for something I did when I was younger.  Let's run down the list of what might be the cause for such punishment:
  1. Murder?  Nope
  2. Promiscuity?  Nope
  3. Buying and use of illegal drugs?  Nope
  4. Hit and run?  Nope
  5. Gossip Girl level rumor spreading, maliciousness or ugliness?  Nope
  6. White shoes after Labor Day?  Nope
Have I done bad things?  Yes. (petty things: teenage shoplifting/doobie puffing/smack talking)  All of which I've asked for forgiveness for and not repeated. But none of them warrant this kind of punishment.

Maybe it's because I'm inherently lazy and do a really good job of feeling sorry for myself.  Something more abstract.  And I'm admittedly neurotic - and quite frankly I've been pretty selfish this summer.

A friend of mine gave me a book for Christmas called 29 Gifts: How a Month of Giving Can Change Your Life.  The author has MS.  She claims that after just two weeks of giving she started walking better and now walks without a cane and has had a clean MRI for three years.  Seriously?!  That might just fall into the "if it's too good to be true it probably is" category.  I dunno if the two are directly related.  But, the idea of being more giving intrigued me.  If for no other reason than to stop thinking about myself for a little bit every day, for crying out loud.  She gets more involved, calling it a "psychic shift".  Whatever you want to call it - I'm ready to start changing the way I think.

I'm on day 12.  It's been really easy and I find myself looking for more and more things to give/people to give to every day.  It doesn't have to be something that will change someone's life - for example, I let someone in front of me in a jammed parking lot this past Saturday.  I think something good is happening to me.  We shall see.

One sentence really leaped off the page at me - so much so that I had to read it four or five times.  In speaking about how this "assignment" changed her, she wrote: "The strength was there inside me the whole time - it just didn't feel worth it to come up with the energy I would need to claim it."

To say it leaped isn't quite accurate. It actually slapped me good and hard across the face.  Maybe, just maybe, that goes back to my dysfunctional relationship with apathy and laziness.  I just haven't felt like it was worth it to try.  Do I believe that CCSVI is real?  Absolutely.  Do I think it's done me good?  Yes.  Do I think it's reignited some motivation that I've always had and just forgot about?  Yes.  And maybe that's the biggest gift to me.  To be motivated enough to make it happen in my hometown, to have it done (twice in three months) and then still want to kick my own ass at physical therapy - with no promise of immediate improvement and not worry about it.  Denison Witmer sings: "I used to worry all the time/But I moved on to live my life now".  Amen!

I also think that patience has been a huge gift.  Waiting out this whole process, then waiting to get better.  I'm more relaxed about it than I used to be.  I think I'm settled with the idea that maybe this is good as it gets.  If not, awesome.  But I have a good life.  I have a really good marriage (I didn't say perfect; there's no such thing), a man who loves me, a really solid support system of friends and family, we own our own home, we're debt free (that's huge), I'm finally at a healthy weight after years of struggle ...and then there's music.  Music, the best coping mechanism of all time.  Writing songs saves me.  It digs me out of some pretty dark holes.  And let's not forget about how MS has affected me.  It could have screwed me up in so many other ways.  Here's what I do have:
  • My cognition is intact
  • I am pain-free
  • I can still sing 
  • I can still hear
  • I can still see
  • I can still breathe
  • I can still speak clearly
  • I can still play instruments (not that well, but I'm not so sure that's a direct result of MS)
  • I have zero tremors- anywhere
  • I have great upper body strength
Really, when it comes down to it: it's just my legs.  That's really not so bad.  Of course, this kind of lift is a pain when it's raining and there's no covered parking (though I do dig that guy's snazzy shirt) and it would be nice to stop asking for help so much.

So why haven't I shown massive improvements?  Who knows.  I don't want to waste any more energy thinking about that.  Sure, I want to walk better.  I also want children, perfect pitch, mad guitar skills, a bigger house, a bigger salary, a perfect body and a lightening fast metabolism.  Some of that might happen... someday.  But if it doesn't my life isn't over - not hardly.  I'm just trying to work with what I've got right now, to manage my day to day, while I try to make myself better and stronger.  Will I get worse?  I don't know - but then again nobody knows what's in store for the future so why waste precious energy obsessing over it.

The logic I keep returning to: everyone has a cross to bear.  I can't think of one person I know that truly "has it all".  Their struggles may not be as obvious as mine: heartbreak, loneliness, chemical dependence - it goes on and on and on.  I haven't given up and I don't plan to.  But I just need to remind myself of all the amazing things in my life.  That should perk me up a bit. Now off to exercise. Cue the Rocky theme. This one's good, too (she wrote, with obvious sarcasm).

Thursday, September 16, 2010

Down the rabbit hole...again.

So here's how Tuesday went: at the hospital at 6:15. It is, in my opinion, unnatural to leave your house when it's still dark unless there's cows to be milked, wheat to be thrashed, or roosters crowing in the nearby vicinity.  Since I was feeling slightly antsy, I only said that thought out loud once.

Regular hospital blah-di-blah ensued - imagine these events in a quick edit style, ala Scott Pilgrim or Shaun of the Dead:
  • changed into gown
  • placement of acti-tred non-slip socks
  • IV set up (after only two sticks...  yes!)
  • checked and marked for pulses in both feet
  • leads for EKG thingamabobs stuck on
  • blood pressure cuff velcroed
  • heart rate monitor positioned on left pointer finger
The nurse asked me the same ol' questions about medications, allergies, etcetera and before I knew it: 7:30.  Another nurse came over and said, "Are you almost finished?  They want her on the table as close to 7:30 as possible."  Booyah.  Let's make this happen!

Off we went.  I couldn't believe it was happening again, so soon.  Then again I really had no idea back in June what to expect 3 weeks post, much less 3 months.  I just knew I wanted to be fixed.  So there I was, back in the ever-capable hands of my fantastic doctor ready to go for round two.

There was still more prep to be done but the best part was when they gave me fresh oxygen.  That little cannula is an annoying thing to stick in your nose but there's nothing like breathing pure air.  The nurse said my heart rate was up (surprise surprise: neurotic girl in a cath lab) so she pumped in a little sedative before we got started.  Dr. X came in and apologized for not having any access to good music at this hospital.  It was the least of my worries, but I (as always) appreciated the thought.  Once they got a lil more sedative in my blood, the details get a little foggy.  The next thing I remember him saying was, "little pinch..." when he numbed the tiny spot for the incision and before I knew it, it was Innerspace, minus the whole Dennis Quaid flying a spaceship inside my body.  So not really Innerspace.  But you get the point, right?

Just like before, the little pinch was all I felt of the catheter going into my femoral vein...

...and for the most part it was the same game, different day.  For the most part.  Remember how I mentioned before that he saw a blockage in my sigmoid sinus, just inside my skull, in my MRV in July?  Well, there's a reason they call venograms "the gold standard", because once he got inside my head and took a good look:  nothing.  I'm thankful for that.  Mainly because I could feel the catheter up inside my noggin and it was not a good feeling.  If he'd seen something that needed to be fixed, of course I would have wanted them to fix it.  I say "them" because I vaguely remember meeting Dr. Y (the neurointerventional radiologist) in the cath lab too.  It's not like we could shake hands or anything - I was swaddled in blankets and sterile cloths.  So I gave him a head nod and as his services were no longer required (sigh of relief) he went on about his day.

What did he find in my silver veins?  No restenosis - so none of the areas he treated in June had closed back up, even a little bit.  He did find three new areas to treat: "incompletely treated stenosis now completely treated" as he put it.  Both valves at the bases of my right and left jugulars were stenosed/malformed and he found a web in my azygous vein - all ballooned; no stents required.

The balloons were a bit bigger than what he used the first time- almost twice as big.  It was uncomfortable the first time - just a build up of pressure.  This time?  From what I can recall during my dopey state of mind... it hurt. So much so that even in the state I was in I tried my best to communicate it.  But I couldn't even get an "ow" out.  It was like a sad, gutteral grunt - something like, "urggghhh...".  I guess I got my point across because they dialed up the Fentanyl with a quickness and I settled back in to la la land in no time.

I remember asking him how it went and if he checked my iliac vein for May-Thurner's.  He said yes he did and it looked normal.  Then I remember him saying something about my azygous and "significant improvement".  But let's remember: those drugs were dancing through my body and to say my recall is vague would be an understatement.  I kinda wish I was a bit tougher and could've been more awake - and this report wouldn't be so hazy.  Chalk it up to Chicken Little (yes, that would be me).  No, the sky wasn't falling; but there were 18 mm balloons inflated inside my jugular veins.  Ouchie.  Cut me some freaking slack.

Once I was all sewn up (no stitches, just more Dermabond), they wheeled me to recovery.  I slept and then I heard Keith asking me how I was feeling.  How was I feeling?  Sore.  And sleepy.  That pretty much summed it up.  Just like last time: no "on the table" miracles to report.  That's okay, though. 

Keith did show me some pictures - Dr. X printed them out before he went to talk to him (yes, my doctor is that awesome) - complete with arrows pointing to what he'd fixed, each page labeled "before" and "after".  Dr. X told Keith he felt really good about it and that he was really pleased with the results.  He warned Keith that I would have a nasty headache the next day but that he thought I should see "significant improvement" - there's that phrase again.  He also said he wanted to talk to both of us when I was a little more... with it.

So I slept.  And I slept some more.  And then, just when recovery was going smoothly, I had to pee.  They wheeled me over to the bathroom and though I got up slowly I guess it wasn't slow enough.  I've never passed out before but I'm guessing that's what it would feel like - heavy limbed but Stretch Armstrong-y at the same time.  Then I broke out into a cold sweat.  ugh.  I avoided puking (though just barely) and got a hefty dose of Zofran which made me sleepy on top of sleepy.

I was moved from a recovery bed to a recovery recliner.  We hung out for awhile and waited for my body to chill.  And I was still hoping to speak to Dr. X before we left.  I think the nurses were ready to shuffle me out and make room for another patient because at one point they just said, "Well if the doctor has already spoken to your husband I don't think you need to wait to speak to him." If I hadn't been so loopy I would've waited.  I haven't spoken to the doctor in person since I had my follow up consult in July and I wanted a full explanation of what he did.  Keith, bless his heart, relayed all the info to me but I wanted to hear it myself.  First hand.  Poo.

The nurse gave me a shot of Lovenox and an aspirin (anti blood-clot/blood thinner combo) and sent us on our way with a script for 6 shots of Lovenox and a note to take daily doses of regular aspirin for two weeks and baby aspirin for two months.  And oh yeah, a script for a follow-up ultrasound for the next day.

He's really got his protocol down - I guess he's had some time to get it right.  I mean, I was one of the first patients he treated so it makes sense that he's got more practice now.

What happened next? More sleeping.  Sore neck.  Headache (not a monster headache, more like a nagging headache).  Ultrasound was good -both jugulars were open and dumping deoxygenated blood back to my heart.  Dr. X offered to call something in for my headache - I was thinking, like, mega-dose ibuprofen or something.  Nope.  Homeboy called in some Vicodin.  My head didn't hurt that bad.  But Keith picked up the script anyway, just in case.

The thing that was nagging me: Dr. X said in an email to me that pretty much everyone he's treated that gets a bad headache the next day has significant improvement of MS symptoms.  But what's a "bad" headache?  My version of "bad" could be a pin prick to someone or a migraine to someone else.  That's a relative word.  Does that mean I won't get symptom relief? Or will it be marginal? 

Oh, God.  Please don't lock me in to this roller coaster again.  Let me be ok with whatever I get - even if it's nothing.  It is, after all, only two days post.  The marker spots for my pulse points are still on my feet and I can't get the tape residue of any parts of my body that had something stuck to it.  My neck still hurts and I'm still exhausted.  It. will. take. time.

Patience.  Tell me where to get some of that?

Sunday, September 12, 2010

Setting a second baseline?

Went for pre-op on Friday.  I'm going back into the hospital Tuesday for a second venogram/angioplasty.  I feel like I should talk about my improvements, etc up to this point and we'll probably film some video today...

But there's not much to report. The two major improvements, with spasticity and bladder, haven't stayed 100%. Last night, for example, I probably got up 4 times to pee and that's been happening more and more. It's not a restful night's sleep when you wake up every couple of hours, only having to settle back down again throughout the night. Ugh. Seriously.

And spasticity is still improved by about 75%. But I'm also taking Ampyra and I notice when I skip a dose that the stiffness in my legs reverts to a pre-angio, pre-ampyra state. So should I attribute improvements to that instead? Who freaking knows anymore. By the way, can't really say that Ampyra has helped with leg strength at all... but, it doesn't make me sleepy like other anti-spasticity meds out there so I'm probably going to stick with it.

Balance is better and I'm making gains at physical therapy. But it's important to stress that those improvements are marginal and relative to my previously sub-par level of function.   Yes, I'm walking a bit better and even taking baby steps without any assistance.  But I can't help but wonder (oh yes, I'm channeling Carrie Bradshaw): is that just a result of me wanting to try harder?  Could I have taken those steps unassisted before but never attempted it because I was convinced I couldn't?

Even if the only result of the first venogram is an unearthing of some plucky "can-do" motivation that I never possessed before... is that enough? I don't know right now. Maybe this isn't the most encouraging blog ever. But who said I was blogging to motivate others? It's just a document. For selfish reasons, at that.

I'm trying to approach Tuesday with zero expectations in the hopes that I won't be let down. I'm trying to be ambivalent. Yes, I'm still nervous and still just the teeniest bit hopeful. It's not possible to walk (or roll, in my case) in to a hospital knowing someone's trying to fix you and not hope for something, anything.

If there are no more improvements, I will stay on track with physical therapy and diet and try to figure out which (if any) drug I will subject myself to. I'm just so tired of waiting for something to work.

And, now that I think about it, I'm not so sure I'm going to post any more videos. I will film them, for posterity if nothing else. But I don't want to give anyone false hope. I could post videos of me taking baby steps without assistance, standing with my feet together and arms out to show improvements in balance, etc etc. But I'm not doing those things all day, every day. It's a snapshot of me at my best before I'm exhausted, or stressed, or had a bad day. Hell I also take a few minutes to slap on some mascara and fix my hair - that's not even accurate. Most days, I'm in my pj's and washing my face/bedhead repair is the extent of me "getting ready for work", because I work from home and don't need to dress to impress. Though it may be a better version of me, it's not real.

Sorry kids, I'm in a crabby mood today. More to come later this week or next...

Saturday, September 4, 2010

I'm 33 today

Today's my birthday.  That allows me the indulgence of waxing nostalgic, right?

Am I where I thought I would be 10 years ago? Hmmm, let's see: September 4, 2000...
I was a fresh faced newlywed, barely home from my honeymoon. I felt officially "grown up" and I reveled in the novelties of domestic life with my new husband: grocery shopping, tending to our apartment, figuring out the little day to day joys of married life. I was in the middle of my first major exacerbation. I didn't know it yet, but the double vision that plagued me for months was the first tell tale sign of many that something was wrong. But we soldiered through it, trying to (unsuccessfully) figure out what was going on with my body.

At the time, Keith and I were playing in a band called The Maccabees.  (No, not the UK dance-rock band; we picked that name waaaay before them in 1998).  The book of Maccabees is one of the books not part of the King James/protestant version of the bible, so being the lone Catholic in the band,  it was kind of a silly joke.  The band was going strong; we went on a small tour the previous summer and put out a couple of EPs.  We were talking to a small independent label called Tree Records that was interested in signing us with one caveat: tour, tour, tour.

That's why we picked our wedding date - alllll because of the potential of touring (that date, coincidentally, was also Keith's grandparent's wedding day).  As it turned out, my health problems, in combination with personal problems of other members in the band, caused an implosion and The Maccabees just kind of fizzled out. 

I graduated from college the previous December with a degree in English Literature.  I never really wanted to go; I wanted to tour and be a full time musician.  But my parents played the "something to fall back on card" and since they so selflessly set money aside to pay for my education, I didn't feel like I could blow it off.  Not that a degree in English Literature sets you on a career track for money, power and success.  I like to read.  So, that's what I picked.  I ever-so-briefly entertained thoughts of going to grad school to be a professor, thoughts that never saw the light of day.  But just having a degree opened doors for me.  I started as a Staffing Coordinator at a small staffing firm in Brandon.  And, 10 years later, I'm still a Recruiter.  It's not bad work; I can't complain.  But when I was 5 years old, I don't remember saying, "When I grow up, I want to be a Recruiter for a large market HR Outsourcing Firm!"  Not quite up there with Astronaut, Cowboy, Doctor, or Rock Star.  But it pays the bills and the set up (working from home) is perfect for me because I can still contribute to my household/society in a professional capacity and not have to a) worry about navigating outside of the house with my limitations and b) feel like a complete waste of space.

Is music still in my life?  Absolutely - 1,000%.  It's one of the reasons I breathe (aside from, you know, the whole needing to breathe to stay alive thing).  And I love that I play with my husband.  We work well together (aside from occasional times we become The McBickersons) - well enough to play in a band and run a small record label.  The label is a labor of love.  No money made there; it's only because we want to hear good music and if that means we pay to have the CDs pressed, so be it.  Of course, it's a little more involved than that and Keith handles the business side.  I'm more of an opinion/advice contributor, which is enough for me.

So, back to my birthday...  There are two significant things inextricably linked to my birthday:

1. On September 2, 1998 a good friend of mine was on Swissair Flight 111 when it crashed in Nova Scotia en route to Switzerland.  It was two days before my 21st birthday.  Jon Wilson was an amazing person.  He was the friend that fought to keep our circle of friends together, despite all of the petty silliness that comes with youthful friendships.  Every year since, our friends (it's a different hodge podge of people every year) meet at his graveside and then go to dinner to fellowship, hang out, reminisce.  Most of us are still good friends.  Some have moved far away, and we're all busy with work, kids, family.  But we always make time for September 2nd.  It's not sad anymore; we remember with happiness and tell stories about our friend.  Naturally, there will always be a tinge of sadness to the gathering, but it's overshadowed by our memories of him.  It's always good to hang out with old friends and that kind of kicks off my birthday celebration.

2. My mom went into labor on Labor Day, so my birthday is always on/around a 3 day weekend.  Score!  That's it.  Not really as significant as #1, I just felt it was worth mentioning.

I got a card yesterday from a friend with a quote from The Birthday Book.  She wrote, "You are quick, volatile and tempestuous and carry a point by force of will.  You have a keen, brilliant mind.  You like to work things out alone and are sometimes impatient in your haste to get them done.  You are a true and loyal friend."  Now, I'm not sure how I feel about dates on a calendar signifying key points of your personality (I know, I know: stars, planets, moons in houses, yadda yadda) But some parts of that are uncanny, especially the working things out alone/impatient in your haste part (and the keen and brilliant mind part, bien sur).  Am I volatile and tempestuous?  Uhhhh, not so much.  Maybe there's a Bizarro Susie born on this day on the other side of the world who sets fire to her ex-boyfriend's belongings and keys cars that park too close to her.  I am the anti-volatile: passive aggressive and non-confrontational.

And in 10 days, I will be back in the hospital.  My impatience is probably what necessitated me going back in for a second venogram.  If I'd just waited.  If I'd just had the MRV before so he would've seen what's going on inside my skull, in the sigmoid sinus - maybe I would've only had to have one venogram.  But there's really no point in wondering about how things could be different.  In contacting my doctor I've set off a chain of events that have allowed many others to be treated.  I'm a trailblazing guinea pig, if you will  And it's not as though I'm heading in for open heart surgery - it's an outpatient procedure with minimal risk.  At least I know what to expect this time around (and now I'll have matching quarter-inch scars at the top of each thigh).  But ahhh, hindsight.  It's a bitch.

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.

Friday, July 23, 2010

Patience. Perserverance. Hope. (5 weeks post-procedure)

I was waiting. And I hate doing that. But I wanted some fantastic news to report in my next post... except nothing earth shattering has happened recovery-wise. In fact, I'm not even sure if I can say "steady as she goes" because that wouldn't be very accurate. It's a constant flux of symptoms. It's exhausting to obsess about how I'm feeling every second of every day. I'm tired of obsessing about it.

Of course, there are other factors at play that determine how I'm feeling. First of all, I haven't been too diligent with my diet. Too much fruit, not enough veggies, not rotating foods... and oh yeah, last night I ate cheese pizza for the firs time in 18 months. Real cheese, real gluten... real tummy ache. In fact, right now I have a big ball of something in my stomach. Probably that delicious, glutenous, chewy pizza crust. While I'm stuffing my face it's a fantastic idea and totally worth it. Hours and days later? Not so much. It all started with one piece of hot, crusty bread at Carrabas's a couple of weeks ago. Then I snuck a couple of ginger snaps. Then, a bite of a sugar cookie. Bad Susie. So now I'm back on track. I begged my husband to be the food police and he agreed. I won't like him when he's doing it but it's what I need to do to stay on the straight and narrow.

And the pizza incident, by the way? Totally pathetic, secret eating. The hubs was at work. Some friends dropped it off. I shoveled it in and immediately regretted it. So sad.

Then there's lack of sleep and fatigue, the nemesis of every person with MS, just waiting in the wings for a comeback. I started physical therapy a couple of weeks ago. First time since February and post-procedure and thoroughly exhuasting. I have new therapist (the clinic director, in fact - all of the staff has changed except for one therapist). I like his approach, more so than my previous therapist's and am hopeful that it will lead to great results. I know for a fact that my balance and walking is better, even just marginally, because the one therapist left that worked there the last go 'round has commented a couple of times "there's no way you would've been able to do that before". Susie:1 MS:0

I tried my best to explain CCSVI in the most truncated version possible. He was skeptical, to say the least. Until I told him about 90% absence of spasticity in my legs. To which he replied, "That's not placebo. You can't fake that." Susie:2 MS:0

He asked me what doctor did it. I told him I couldn't say. And then I told him to not put it in the report to my neurologist (who still doesn't know I did it but prescribed the therapy for me so he'll get regular updates). He looked at me like I'd had it done in an alley with a rusty knife. Finally he said,"I'll tell him it's the Ampyra or hypnosis or something like that." Susie:3 MS:0

Back to sleepyland: When I'm tired, I get around worse and then I think that any improvements were all in my head. But I still stupidly try to do everything I would do when I'm not feeling tired. And, for reasons I will explain later, the worry monster has made another appearance which severely affects my sleeping habits. He's settled in quite nicely. I really want him to leave. Susie:3 MS:1

On top of that, a new comment was posted on my youtube account about my videos: "Unless you put up the caption for the pre and post videos, there is no way to tell the difference between the two videos. No change on right foot and still need to balance using the wall. Sorry it didn't work out."

My response: "Wow. Go tell some kids that Santa Claus doesn't exist and ruin their day instead. You're wrong. The time difference on each video is proof alone."

I didn't want that sourpuss's comment to get to me. But it did. I really wanted to say eff you, but I would never. Yes, sometimes it's called for. But I just don't have the cojones for that. That dude really ruined my day. And the day after that. To say I was in "a mood" would be an understatement. Way to go, youtube jacknut. Why do people do that? I didn't post those videos for naysayers to pop my confidence balloon. I'm looking for validation. Aren't we all? Even my response is proof of that. It's about believing in something and wanting reinforcement.

This happened about a week after I had a one-month follow up with my Interventional Radiologist. On July 12th I went for an MRV (an MRI of your veins) of my head, neck and chest. It's a way for my doc to see if all the areas he ballooned in my jugular veins are still open. My appointment was on the 14th. Thank goodness Keith went with me because it was a lot of information to absorb.

The status: all three areas are all still open, except the left upper internal jugular vein (behind my ear) which is looking slightly narrowed. But, he said that could just be anatomical - and if it isn't, it will need a stent at some point in the future.

The interesting news: on the MRV of my head, he found that my right sigmoid sinus is almost completely occluded - to the point where all of the blood draining from my brain is only draining down my left side jugular back to my heart. Sigmoid sinus, you ask? What's that? Find out here. Can it be fixed? Yes. But, it seems a bit trickier - it's just inside my skull, almost to the top of my earlobe. And it will definitely need a stent because it's so severe.

Sidetrack: What's the big deal with stents? Well first of all, it's a permanently placed foreign object in your body. Once those suckers are in, there's no turning back. They're more painful and require a longer recover along with blood thinners for about 6 months and blood work twice a week to make sure the blood thinners are working (because you don't want a blood clot). One of the blood thinners prescribed, Lovenox, is a very expensive injection - with insurance. And there's still a chance that even with a stent the vein could narrow again.

This news blew my mind. Does it mean I'll see more improvement? Not sure. But it does make sense that I've only seen marginal improvements to date, because not all of the problems areas have been re-opened.

When can it be fixed? Well, my doc consulted with a neuro interventional radiologist that he works with who said it can and should be done. And my doc has done it before. To get more information/feedback he's attending a Professional Symposium on CCSVI, where he's going to present my case. (Pretty cool; and it's going to be recorded so I can watch it after the fact.)

I'm a little hesitant. The main areas of focus in CCSVI research (so far) have been the jugular and azygous veins. The sigmoid drains to the jugulars, though. The wheels in my brain started spinning as soon as we left the appointment. I sent a message to the Chief of Radiology/host of the symposium/champion of CCSVI on thisisms.com, where he has graciously made himself available to a hardcore onslaught of questions from desperate MSers. His response: "That is a worrisome issue. I would not myself treat such a problem, if it was real. I would work with my neurointerventionalist as a team." Ohhhh-kay. I responded back to ask what about it specifically was worrisome... so we'll see what he has to say.

My doctor did consult with a neurointerventionalist and I have complete confidence in him. I'm 95% sure I'm ready to do this. He said he could schedule it for August or September. He wants me to follow up with him when he gets back from the symposium... which is next week.

If I could just get through the next few days... at least for some news. Then I have to decide what I'm going to do.

Thursday, July 1, 2010

July 1, 2010 13 days post-procedure (celebrating little victories)

I know I'm neurotic and it's not that hard to make me cry.  I blush with shocking quickness and I err on the side of passive-aggressive, avoiding confrontations in every way possible.  I like to laugh and I'm goofy - I've embraced my clutziness.  That's my succint emotional profile.  Until about two weeks ago, anyway.  Right now?  I'm a mess.  I've found all of these dark corners in my brain and subtle sparks of feelings that I didn't know even existed.  A veritable panoply  - enough to put a bonafied crazy to shame.  Let's list them off, shall we?

   1. hope
   2. anger
   3. grief
   4. frustration
   5. elation
   6. giddiness
   7. despair
   8. hopelessness
   9. joy
  10. resignation
  11. jealousy
  12. pride
  13. indignation
  14. happiness
  15. fear
  16. worry
  17. self pity/general sad-sackery

The last is my favorite.  It's so easy to feel sorry for myself and to forget that I made all of this happen.  On my own. Well, after I was pointed in the right direction anyway.  But I took the initiative, I started the search for a local doctor supportive of CCSVI in April.  So in just a little over 2 months I've managed to track someone down and make it happen.  A doctor who has now (so I've been told) said he wants to make this his "life's work".  I did that.  Pretty badass.

But I'm also guilty of putting all my eggs in the CCSVI basket - and I've already admitted to doing that.  Especially when you see a before video like this and an after like this - not even 24 hours later, how can you not?!  I have to repeatedly remind myself that Denise Manley (the woman in the video), God love her, is very blessed and lucky but not an example of status quo.  So much so, in fact, that there's a facebook support group titled "Post CCSVI Slow Recovery" with 269 members.  One of the doctors in Poland, Dr. Simka, tells his patients to give it three to six months.  And there are many variables.  The two biggies:

  • When were you diagnosed? 
  • Where are you on the EDSS or Expanded Disability Status Scale?  The range is 0 (perfectly healthy) to 10 (dead).  I'm a 6.5: "constant bi-lateral assistance (canes, crutches, braces) required to walk 20 meters without resting", in case you're curious. 

Those are some loaded questions.  Maybe you were diagnosed in 2007 but started with onset symptoms in 2000 - it just took that long for a diagnosis.  Or you could be a 0 on the EDSS but have crushing fatigue, cognitive problems, issues with speech or hearing.  Thing is, no two people have the same disease course.  Period. Ever. So how can you have any accurate expectations of what your recovery will be like?  You get your blockages fixed and the blood starts to move freely but then what about all of the iron deposits on your brain and/or spine and years of nerve damage?  Why does it have to be so freaking complicated?

So here I am, almost two weeks post-procedure.  Have I shown improvements?  Yes, absolutely.  As many as I'd hoped for?  Not even.  But that's my fault.  Shame on Susie.  And my husband warned me.  I don't like to acquiese on this one.  I am eternally optimistic and he is the complete opposite.  But I need that right now - not complete skepticism, just a rational voice, for crying out loud.  I am such a sucker sometimes.  Don't get me wrong - in no way was I duped.  I had a legitimate problem that needed to be fixed.  Finally, something in this disease that can be fixed.  But it's not happening fast enough for me.  Gah!

Infamous list-maker that I am, I documented all of my symptoms etc prior to going in on June 18th.  I also got footage of me walking.  I wished I had gone more in depth - shown how bad my balance and spastiticty were, for example.  But it's too late to do anything about that now.  Here's my before list (with more sensitive topics removed to spare me some dignity):


Current MS symptoms (diagnosed 10/2001; last relapse 07/2006):

numbness (middle of back down to feet)
cold feet
cold sensation in legs
tingling/creepy crawly sensation in legs
weakness (both legs and feet – worse on the left side)
balance problems
proprioception problems
involuntary leg twitching (in evenings)
left foot drop
spasticity in legs and back (can't bend left knee unassisted)
clonus in both feet and lower back
heat intolerance
neurogenic bladder (always feel like I have to pee)
unable to empty bladder
minor fine motor skill problems with hands (buttoning shirts, etc)
double vision when over heated or anxious

Current medications:
Ampyra 10 mg 2x/day
Flomax 0.4 mg 1x/day
Novantrone IV every 4 mos (1 dose left)
Toviaz 4 mg 1x/day
Restoril 15 mg as needed (app 1x/mo)
Xanax .25 mg as needed (app 1x/mo)

Current supplements:
Candex 3x/day
Probiotic 3x/day
L-glutamine 500 mg 3x/day
Biotin 1000 mcg 1x/day
Vitamin D3 5000 IU 1x/day

Diet: omit soy, dairy, gluten, alcohol, refined sugars, red meat and limit fruit.

Currently have/use the following medical equipment:
3 wheeled walker
hand controls on car
forearm crutches
single prong cane
quad cane
AFO for left foot
bath seat

Click here for my before video.

I started to keep track of my post-procedure symptoms and any changes in a notebook.  Here's what I've written so far:
Venogram/Venoplasty performed 6/18/10
Improvements include:
  • warmer feet
  • spasticity gone (legs no longer tense and then relax when I stand up after sitting or laying down)
  • clonus improved (gone from 8-10 beats to 2)
  • easier to go to the bathroom/empty bladder
  • sleeping better
  • only got up once during the night to go to the bathroom instead of the usual 2-4 times (with meds)
  • feet are not hypersensitive to touch
  • L'hermittes sign gone
  • legs are less numb
  • feel sturdier
  • usually by 3:00 I'm ready for a nap but I breeze through the afternoon and find that I'm not tired at night.
6/24 (for video of me talking about improvements, click here)
  • left foot drop improved
  • stood at the kitchen sink doing dishes for ten minutes (normally when my legs start to get tired I stick my belly out and lean my hips on the edge of the counter for stability – that never happened) and then stood at the stove for five minutes making breakfast
  • bent down to wipe some water off of the floor and didn't have to hold on to the counter for support
  • standing and talking to my husband with my arms crossed, not holding on to the walker
  • numbness continues to improve; sensation is returning from waist to toes
6/25 (video of walking here)
  • able to bend and swing legs into car instead of putting my hands behind my knees to bend them and place them in the car
  • stood at bathroom sink washing my face and didn't lean into it with my forearms for support
  • able to pull on shorts (seated) without having to hike my legs up with my hands into each leg
  • flexibility improved (laid on my stomach and was able to grab my foot - left and right and bring it towards my butt)
  • sit to stand (twice) without holding on to anything
  • clonus returned (not sure I was checking it the right way before)
  • walked with one forearm crutch around house (during work day)
  • legs not feeling as sturdy
  • cold sensation in feet and legs returned
  • couldn't sleep last night; woke up three times to go to the bathroom
  • legs and feet feel warmer (sensation-wise)
  • walked with one forearm crutch for a few hours
  • walked (waddled, more like) down the hallway - about ten steps - without holding on to anything, 3 or 4 steps at a time very, very slowly

So, placebo?  I think not.  But full disclosure:  I started Ampyra about 3 weeks before I went in for the procedure, but I stopped it two days before to get a baseline for how I was really feeling (I've yet to notice a difference in leg strength from Amypra; just sensory changes).  I was off of it for 6 days.  I called and spoke to a pharmacist at the drug company who said it is basically like starting from scratch - and it's supposed to take 2-6 weeks to kick in.  That was encouraging in the sense that, any improvements I am seeing are from the venoplasty, not Ampyra. I filmed myself walking about a day after I started the Ampyra and it's exactly the same the "before" video I filmed on the 17th - proof positive that the Ampyra is not clouding any actual improvements from venoplasty alone.

The walking/sensory improvements aren't all day every day, either.  There is an ever-present ebb and flow, one that I could do without.  But the two very first improvements (with spasticity and bladder) have stayed constant through out.  I have to at least be thankful for that.

Should I be happy with what's happened to this point?  Of course.  But I'm forever looking for the next thing - and it's difficult to let yourself down from a full on crusade... you want that high to continue.  Worst part?  I've never been a patient person, so this is a real struggle for me.

Thankfully I've spoken to many people who were/are on the same track as me -celebrating little by little, incremental improvements.  So let's just see how this unfolds.  But I hope I can simmer down a bit and be a little more philosophical about this.  Or I'll just have to get on some crazy pills.  And I really don't want to take any more medication...

Monday, June 28, 2010

June 18, 2010

Friday, June 18th. A day that could change my life forever. Or, not at all. See, some people are treated for CCSVI and show no improvement. Some are treated and have transformative, near-miraculous results. MOST who are treated show small, incremental changes over a few months. But, I had filled my brain with repeated viewings of youtube videos that fall into the "near-miraculous" category. And I hoped to God that I wouldn't be disappointed.

The day before on the way to my pre-op registration I was an emotional mess. Singing along to songs in the car my voice would waver and then break as I was reduced to tears by a lyric or even a swell in the music. Yes: I put all my eggs in the CCSVI basket. Whether or not that was a smart decision remained to be seen.

So back, to the 18th. I didn't need to be at the hospital until noon but I went ahead and took the day off because there's no way I would've been able to get any work done. I was able to sleep in a bit (thanks to the 2 Restorils I popped the night before) but I still woke up antsy. I had no idea what to expect (everything was explained to me ahead of time, but that didn't quite prepare me) and there was still a nagging worry that things would not move ahead once they found out I had MS.

See, this procedure - a venogram to diagnose followed by a venoplasty to treat - has been used successfully for over 30 years. BUT if you attach MS to it, it becomes "experimental". I'll repeat what I've said before: Yes I have MS. But I also have venous compression. And that's what I was being treated for.

Keith and I got to the hospital right at noon and we ran into the doctor in the lobby. Took that as a good sign! They took us up to pre-op and I got settled in (gown, iv, and those fabulous hospital socks with the treads dubbed my "souvenir socks" by the nurses). We had a private room, wireless internet and a cell phone for Keith with my patient ID so the doctor could call him after he was finished. Pretty posh. After all that, it was about 1:30. The doc came in to say hello and talk to us about what to expect. Thanks to my little friend Xanax, I wasn't even nervous. Just freezing cold. Yay for warm blankets!

Now, keep in mind that I had yet to have any diagnostic tests. So there was a small chance that once he looked at my veins he wouldn't find anything. I was convinced that wouldn't be the case but in the very tiniest corner of my mind I knew that was a possibility. There was also the chance that once he got into my veins and opened them with balloons (that were then removed), they wouldn't stay open. The only option after that is stents. Which, though they're more painful and require a longer recovery/post-op drugs/weekly bloodwork, are potentially better in the long run because there's no risk of restenosing (having your veins close up again). So far, in treating CCSVI, there's been one case of a stent migrating from a patient's jugular to their heart, and the patient required open heart surgery. But the risk is very, very low. 1 in 5,000 according to my IR.

We hung out for a little while longer and then a nurse came to take me to the OR. Not sure if it's actually an OR or not, but I'll just call it that anyway. They transferred me to "the table", put a lovely and fashionable cap on my head. Then there was the other prep work (ahem... hair removal, and whatnot). But the nurse was very discreet and told me everything that was going on. Then, the sedative. Oh, the lovely sedative. Talk about taking the edge off. I was totally aware of what was going on, but I had zero capacity to be worried about it. 

Did I mention how awesome my doctor is? Totally approachable, set me at ease - he even asked me what my favorite Pandora station is. At first, I said Versus and then decided that I should probably pick something a little more mellow. So, Ida it was. The first song that came on was from Heart Like a River called "Forgive" (click here for a snippet). Every time I hear that song, it will remind me of that day. It made me a little teary, right there on the table. I know, we've already established that I'm a crybaby.  I also heard some Matt Pond PA and Death Cab. Surreal, but awesome.

I felt a little prick at the very top of my right thigh, almost at my bikini line. That was to numb the incision site. That was all I felt of the catheter going into my femoral vein - less painful, in fact, than my IV.  See there are no nerve pathways inside your veins, hence the absence of discomfort.  There were 6 or so monitors to my left, but I couldn't always see what was going on because I had to position my head to whatever direction that would give the doc the optimum point of view.  Sometimes he asked me to hold my breath, so my veins could get their close-ups.

Every once in awhile I'd ask, "What do you see?"  First up? My azygous vein was clear  (see below, it kinda looks like a candy cane.
I thought for sure there would be stenosis in my azygous because a lot of lesions are on my spine.  But, what do I know?

Then he began to balloon the veins he found stenoses in, starting at the base of each jugular (each side was 50% stenosed).  It felt uncomfortable - not painful.  Like there was a lot of pressure building up in my neck.  I heard cracks and pops, too.  And he would ask me to turn my  head to the left or the right.  His final report states that he ballooned the base of each jugular three times.  Thanks new my new BFF Versed (pronounced Verset), I don't remember much...

Moving higher up to my left internal jugular, directly behind my ear, he found 75% stenosis .  This one was a little more uncomfortable than the first two - and he had to balloon it four times. 

All 3 venoplasties took - no stents.  Now we just have to keep an eye out for restenosis.  I'll know if that happens because any symptoms that subside will return with a quickness.  Here are some more pics:
Left Internal Jugular before

...and after

The next thing I heard, "Ok kiddo, we're all done."  He put some pressure on the incision and little strip of Dermabond (kinda like fancy scotch tape) and it was off to recovery.  Keith came in to see me right away and he'd just talked to the doc, who told him, "I was really hoping to find something more severe."  Aw, he really wanted to fix me.  But he did!

The next couple of hours are kind of fuzzy.  Still  full o'sedatives, I vaguely remember not being able to sit up and being told to lay as still as possible.  I hadn't eaten anything since dinner the night before so I sucked down some applesauce - it was interesting to try and eat when I was almost laying flat.  But, I made it work cause girlfriend was huuuuun-gry.  Apparently I had a phone conversation where I told my mom I'd call when we were at home (which I didn't because I don't remember telling her that.  So sorry Mom!)

I had none of the "on the table" immediate improvements - but it was kind of hard to tell because I was laying down.  My feet felt warmer, but I was also wearing a cozy pair of socks, so that wasn't a good gauge.  The first real thing I noticed?  When I was getting off the bed and stood up for the first time in about 5 hours, my legs didn't do their usual lock up and release.  Spasticity was the culprit there.  But it was completely gone.  And I could pee!  Hallelujah, I could pee!  Oh, it's the little things we take for granted - yes, you don't know what you got till it's gone. I won't go into too much detail describing my potty issues.  Who cares, they weren't around to bother me anymore!

Then I went home, and the healing began.  Slowly but surely I was on my way to good things.  More details to come...

Wednesday, June 23, 2010

CCSVI and I (hold on kids, this is a long one)

I'll admit it: I'm a MS message board lurker. Thankfully I haven't become a regular, commenting on the minutia of other people's lives and getting so sucked in that I forget how to live my own. In fact, the rare times I do post I don't often get responses, probably because I'm not a member of their online "family" (Facebook is a whole 'nother story. I heart Facebook.). I have an awesome, supportive, real live family - don't discard my questions because I don't respond to "IhazMS100"'s post about how much his or her life sucks. Ok, rant over.

Last December, in the midst of my anonymous eavesdropping, I noticed a post about something called the "Liberation Treatment". At first I chalked it up to the latest if-it's-too-good-too-be-true-it-probably-is fad. Then, the almighty Google opened my eyes. I'll spare you the boring details (if you want those, click here). But here's the gist, in a nutshell: a vascular surgeon in Italy found a prevalence of stenoses (or narrowing) in the internal jugular veins and the azygous vein that drain blood from the brain and spine - two areas affected by the lesions that cause disability in Multiple Sclerosis. The narrowing causes a build up of old blood and lack of fresh blood flow. This also causes iron deposits which are thought to bring on the MS symptoms. It's officially titled CCSVI or Chronic Cerebrospinal Venous Insufficiency. With a simple diagnosis and outpatient treatment, MS sufferers were recovering lost abilities and returned to the lives they lived pre-diagnosis. Hot dog!

(It's not a cure, but it has scratched at the wide surface of unknowns about MS and it's a huge leap in the right direction.)

This idea has essentially turned MS up on its head. Doctors tend to adhere to the established idea that MS is an auto-immune disease and that the body is attacking itself. So were the neurologists on board? Not so much. Except for a good handful, CCSVI is widely ignored by the MS medical community. Here's why that puzzles me: if anyone, MS or not, had a blockage that wasn't allowing proper blood flow to the brain and spine, shouldn't that be corrected? Are the doctor's livelihoods threatened? Are they forgetting that hippocratic oath they took way back when? Are they being courted by the MS drug companies? Who knows. All I knew was that I wanted to make it happen. As soon as possible.

In addition to my message board rant above, I am also anti-support group. Who wants to attend a giant pity party with burnt coffee and stale cookies? No thanks. But several years ago a friend of mine said, "Hey I have a friend that was just diagnosed, can I put her in touch with you?" So I finally got in touch with a real live person with MS that was my age. She looked really familiar to me, so I asked if I knew her from somewhere. She said, "Um yeah, Susie. We were in P.E. together in the 7th grade." Doh! I felt so stupid.

Awhile after that, one of her best friends was diagnosed so she joined our "group". Then, another friend of mine said his friend's wife was just diagnosed so she joined the group. And finally, another friend of mine was diagnosed. All of us in our thirties. All of us in the same town. All of us connected in one way or another. Sad but good, at the same time. We meet once or twice a year for mild kvetching, story sharing, and for reassurance that we're not going crazy. Burnt coffee and/or stale cookies not permitted.

We're young, open-minded, forward thinking individuals so obviously CCSVI came up. We met before Christmas and then began having fairly frequent phone meetings to talk about the latest news. At that point, there was only one place in the US that was doing the MRI Venography diagnostic test with the correct protocol and it is in Buffalo, NY. Not sure if it would be covered by insurance AND not sure what I would be able to do with the test once I had it, I briefly entertained the idea of going to Buffalo and then decided to wait. The timing was bad for me. End of story. If it was meant to be, it would happen on its own. Two of the girls from our group took the trip up there - both found they had blockages.

I let it lie for a few months - work, trips, and life happened. It fell by the wayside. Then in April, I had to have an ultrasound done on my kidneys (for something else; no biggie). From the research I'd done, I knew that Interventional Radiologists were the docs to talk to about getting treated. So, I went to the website of the testing facility I planned to visit and found that, sure enough, they had IRs on staff. I took a gamble and decided to call. Worst case scenario they'd dismiss me as a crazy lady. I was okay with that.

When I called, I got the receptionist on the line. One of the doctors just happened to be standing by the desk. She put her hand over the phone and I listened to a muffled conversation, attempting to make out the words. Then the doctor picked up the receiver and talked to me about it. I gave him my schpiel and he referred me to a neuroradiologist on staff. I called him and they called back within half an hour to set up a consult within a week. To stay I was stoked doesn't accurately describe my feelings at that moment. And so the obsession began...

So the consult went well but there was some hesitation on the IRs part because it's new territory. He wanted to get IRB approval from the hospital to make sure it was all on the up and up. The only problem with that? IRB approval takes a long time. Longer than I was willing to wait. I gave it a good six weeks then I battened down the hatches and continue my mini-crusade.

I should take a moment to point out that there has been a huge online grassroots movement for CCSVI - building awareness, educating people, providing resources on where you can get tested and treated, etc. Someone (that I am eternally grateful to) posted a link on Facebook to a professional association page with a handy "doctor finder" link. I searched by city, then by specialty (venous disease) and got a decent list of doctors to contact. I thought the easiest way to start would be to send an email, so I picked three and typed away. Lo and behold, all three responded within 24 hours. Talk about restoring my faith in the medical community. I was elated and anxious to see how it would all play out.

Within two weeks I had a consult scheduled and my procedure was scheduled for a week after that! Booyah.

Was this easy? Yeah, that's the understatement of the century. I don't know if you (the reader) are spiritual or believe that there's a greater force in the universe at work for better or for worse. But, I can't deny that God was on my side with this one. Big ups to the dude in the sky.

Then it was time for the waiting and the doubt and the nerves and the hope and the fear and the thoughts of limitless possibilities to set in. Stay tuned.

Less like hitting a brick wall and more like banging your head against it, repeatedly

So, faced with an unclear prognosis and absolutely no idea what to expect what would a good American girl do? Trust her doctor and big pharma, naturally. And I have lined several drug company's pockets for years. First it was Avonex, then Rebif, one dose of Tysabri (when it was called Antegren- before it was pulled off the market and renamed), Betaseron and finally Novantrone. I think I mentioned this before, but none of those drugs, except Novantrone, worked. 3 to 4 relapses a year, no thanks to the weekly/three times a week/every other day/daily intramuscular or subcutaneous injections I was giving myself. A human pincushion for nothin'. Except for maybe horrible fevers, chills, and body aches. And for that: a special "thank you" goes out to interferons and glatiramer acetate.

So it was time to open a can of whoop ass on MS. What was next? Novantrone. A chemotherapy drug with a life time dose limit (to stave off heart damage) and an increased risk of leukemia. Awesome. I should also mention that Novantrone repeatedly opens multiple cans of whoop ass on me - full on toilet hugging, limp as a wet rag whoop ass that takes me at least a week to recover from. But, it is doing the trick. I'll celebrate four years in remission this August: no better, but no worse; just calm waters. There's a catch (as there always is). I only have one dose left.

I knew at the start of 2009 that I was racing against the clock. So I decided to test another route: diet. That's after trying several other "off label" treatments over the years: the Swank Diet, LDN, manuka honey with bee venom, 4-ap - none of which did a thing. So I stripped my diet of all things delicious and processed (gluten, dairy, soy, refined sugar, yeast, caffeine and limited alcohol). I noticed some changes right off the bat and lost 25 pounds. My cholesterol dropped 30 points, too. I have more energy and I feel good. But symptom-wise? Not so much.

So I decided to go even more hardcore with it. I had a food sensitivity test called the ALCAT test done. It boggles the mind (see below)...

...and confirms that I need to stay away from gluten, dairy and sugar. Booooooo.

Before the ALCAT, after the MS Recovery Diet and during Novantrone I read about CCSVI. Which is a whole 'nother post.

Friday, June 18, 2010

Let's Take It Back to the Start

Taking it back to the start doesn't imply when had my first symptom or even when I was diagnosed. I knew about MS and all of its ugliness way before I experienced my first symptom.

When I was (a chubby, sarcastic, bratty little) 10 year old, my mother went blind in her left eye. Totally unexplained. It lasted for a few weeks and subsided on its own. She was 35 - 3 years older than I am now. I was scared and didn't really understand what or why it was happening and I think that pretty much sums up how the rest of the family was feeling, too. For the next 10 years there was a list of symptoms - numbness, tingling, trouble walking (sometimes with a cane) that would come and go, locking our family into an involuntarily roller coaster ride. We never knew where that ride would take us. Her neurologist (who had a comb-over ala Gene Wilder in Willy Wonka, so let's just call him Dr. Wonka) took his sweet time getting to a diagnosis.

Finally, ten years later, she was diagnosed by a spinal tap. I was 20. I didn't really understand the disease and quite honestly I resented the whole thing. Not my mother - just the absolute lack of control, not to mention the complete open-endedness of it all. No surgery or drugs could correct it. It's a disease with no cure.

At the time I was playing in a band called Pohgoh. A band that changed my life - gave me confidence, camaraderie, and memories that I will always keep close to my heart (oh and a drummer that, 4 years later I married - 10 years ago this August!). We put out an album and a couple of 7-inches. One of the songs I'd written made it to a 7-inch that we put out. The B-side is a song called "Bernadette" - my mother's confirmation name. It expressed my frustration and selfishness about MS and how it was changing her right in front of my eyes.

Within a year I would start to experience transient symptoms here and there that were easy to dismiss because they didn't last long. MS was the last thing on my mind. Seriously.

Jump to August of 2000. Three days before my wedding, in fact. My mom and I were driving to pick up my dress and all of a sudden there were two of everything - my right eye couldn't stay looking ahead, it kept rolling to the left. We chalked it up to stress, so I pulled over and my mom drove. Too bad it was way more than that. It lasted up to and all through my wedding and honeymoon - and three months after (Just to clarify, I didn't look like a googly-eyed doll, it was only when I was trying to look ahead). Went to see Dr. Wonka. He did an MRI of my brain and an eye test (called an Evoked Potential) and diagnosed me with a "sixth nerve palsy". Which basically meant I had a mini stroke in my eye. Why did I have it? What caused it? No explanation was given.

Here's where I screwed up: the double vision subsided and I was feeling good so I took his diagnosis, packed it up in the "worry/unknown" box and locked it away. I should've gotten a second opinion. Big mistake.

I have to stop again for a moment and tell you how perfect Keith was through all of this- he made little patches out of black construction paper to put inside my glasses and sunglasses so we could go about our lives as "normally" as possible. We joked about his wife, the pirate. And all of my friends went with it too - if they were concerned, they did a good job of masking it. In our first year of marriage, we had to deal with a lot and he was right by my side at all of my doctor appointments. He was the voice of reason and perspective when a new unexplained symptom would pop up and I was freaking out (cause, let's be blunt: girlfriend is neurotic). He just rolled with it and so many others would have walked away. The divorce rate for couples with MS as an unwelcomed member in their bed is pretty high. I'm so lucky. That boy must really love me.

So from fall of 2000 to the following fall of 2001 I had a few more symptoms come and go - my legs got numb, my hands got numb (to the point where I couldn't hold a guitar pick), if I'd bend my head and look down I'd get this weird, creepy electric shock feeling going down my spine... more mounting evidence that I couldn't dismiss. Then something happened that I absolutely couldn't ignore.

On the morning of September 11, 2001 when the whole country was in a panic, I was working in the HR department of a call center. No reps came in until the afternoon so we just had a small admin staff getting ready for the day. Well once the news broke we put the radio on the PA system and went to a training room to watch the day unfold. I remember racing to that room and getting so angry with myself because my left leg was completely unresponsive - I was just dragging dead weight, trying to get there as fast as I could. Something was very, very wrong.

About a month later it was time for a second opinion. I went to see another neurologist - this time, I had MRIs on my brain and my spine (remember: Dr. Wonka only did one on my brain). On October 26th I went back for my follow up after the test. But first I had to pick up my films to take to the doctor. So I picked them up, sat in my car for a minute and looked through the giant envelope. I couldn't see anything on the MRIs, I didn't know what to look for. Then I read the radiologist's report: "consistent with Multiple Sclerosis". That warranted a freak out. I called Keith. He left work and joined me at the doctor's office.

Everyone at Keith's office dressed up for Halloween. And since it was the Friday before - Keith went in to work dress in a nun's habit and robe (complete with his red beard sticking out). So he was racing to the doctor's office and realized he'd better change. If we'd been filming a movie that would have been a black comedy moment for sure. Me getting diagnosed with my husband in a habit.

We went home and I cried for a little bit. Keith cried too - and I knew he must have been devastated because he. never. cries. Then we decided to get out of the house to get our minds off of it. I just remember thinking all afternoon - will I be always be able to walk this far? up these stairs? will I be in a wheelchair? when?

I really had no idea what I was in for.

Tuesday, June 15, 2010

Before I take it back to the start...

I'm 32 years old. Not old, not young; nicely in between. I know what I like and I'm comfortable in my skin - finally after years of feeling prickly and out of place. And I've managed to do that while carrying a huge weight on my shoulders, which I'm pretty proud of.

Multiple Sclerosis isn't simple to explain. It's oh-so-complicated and insidious. No two people are affected the same way. No one is 100% sure what causes it and no one can tell you what your prognosis will be. And on top of that, no one truly knows why or how the drugs prescribed to treat it actually work - if they work at all. I've tried them all. And only one has worked - if you consider working telling someone,"shhh."

I requested copies of 8 years worth of charts from the neurologist I've seen since one year after my diagnosis. I just finished pouring over them - fascinating and depressing at the same time. How many people have documents of their own physical decline? I went from being totally able-bodied to needing a cane in one year. Then after about 3 years it was on to a wheeled walker. Sometimes a wheelchair. Three years ago I got a scooter. So, that's that. I don't have much to say about it. It just is what it is and I am willing to do what it takes to maintain status quo as a functioning member of society. I outgrew the blush on my cheeks when people stared as I hobbled by. Now, as un-confrontational as I am, it's a win if I manage a dirty look. Because ultimately, it's really none of your business.

I was (and still am, to an extent) of the opinion that blogs are for the self-involved and attention starved. More than anything else I want this to serve as a document for me. Because let's face it: I have messy handwriting.

Where to start? Do I just talk about MS? How does anyone get the swing of this? That's enough for now. G'night.