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.