Friday, July 23, 2010

Separating Fact from Fiction: CCSVI

It's a sad state of affairs when five letters can drive such a wedge into the MS community.  Five letters when combined resulting in everything from great hope to overblown internet hype.  Those five letters are CCSVI, which stands for chronic cerebrospinal venous insufficiency.

I think it's best to start with the basics.  The term CCSVI, and the procedure, are both the result of one man's loving attempt to save his own wife from the ravages of MS.  That man is Dr. Paolo Zamboni.  Dr. Zamboni's procedure is based on his theory that iron builds up in the brain, blocking and damaging these crucial blood vessels. As the vessels rupture, they allow both the iron itself, and immune cells from the bloodstream, to cross the blood-brain barrier into the cerebro-spinal fluid. Once the immune cells have direct access to the immune system, they begin to attack the myelin sheathing of the cerebral nerves, allowing Multiple Sclerosis to develop.  By opening these vessels via angioplasty, he hoped to be able to restore the function that MS has stolen.  

He wasted no time in making his wife his first patient.  A catheter was thread up through blood vessels in the groin area, all the way up to the effected area, and then a small balloon was inflated to clear out the blockage.  Three years after having having this new procedure done, his wife claims to be symptom free.  Thus, the explosion of hype, controversy, and hope dubbed the "Liberation Procedure" was born.

Though the cause of Multiple Sclerosis is unknown, it's widely thought to be an autoimmune disease rather than one of vascular origin.  This alone has caused quite a rift in the MS community, some hailing the Liberation Procedure as a cure, others scoffing at it entirely.  Despite the controversy and lack of medical data to support the CCSVI procedure, thousands of MS patients desperate for help have flown to clinics in Poland, Bulgaria, Mexico, and India to have this procedure done.  As a result, the internet has exploded with YouTube videos of MS patients being cured and others claiming it was a complete failure.

What's my opinion on all this?  My spirit wants to jump for joy in hope that maybe my days suffering from MS could be nearing an end.  But, I am logical minded by nature, and despite my overwhelming desire to be free from this horrible disease I can't ignore the facts before me.  Thus, I'd have to say my opinion is one of great skepticism mixed with hope.  I do not believe CCSVI treatment is a cure for MS, as many do not.  Even Dr. Zamboni has said repeatedly MS patients should not stop their disease modifying drugs after the 'Liberation Treatment'.  I do however hope that in time it'll be proven to be an effective treatment to alleviate many of the awful symptoms MS produces.

It saddens me greatly to see so many with MS basing their own opinions on CCSVI based strictly on internet hype.  I have read post after after post on the Facebook NMSS board of people claiming CCSVI is a cure, to throw away your meds and be 'Liberated', and raging tirades that the US and Canada currently don't recognize the CCSVI procedure as a treatment for MS.  There's good reason this procedure isn't currently recognized as a treatment.

Currently, there have been no scientific studies done to determine the effectiveness, long term risks and benefits, or even safety of treating CCSVI.  In fact, the first ever clinical trial on CCSVI is currently underway in Buffalo, NY.  Until some more scientific testing is done, especially using blind and double blind studies, you can not expect the medical community to embrace CCSVI.  There are far too many unknonws.  

Already some serious questions and risks have arisen.  First, the angioplasty technique used in treating CCSVI was actually created for heart patients.  The vessels being opened in CCSVI are much smaller, thinner, and more delicate than those in the heart.  Already some deaths have been reported due to rupture. Some doctors already performing this procedure have even go so far as to use stents (also made for heart patients) to hold the vessels open, greatly increasing the risk of rupture even further.   Secondly, it's not even known at this point if what has been dubbed CCSVI isn't a normal condition of aging found in all people, so that needs to be determined as well.  Third, a great many in the medical community question the longevity of opening these vessels, speculating it's likely a procedure that would have to repeated numerous times throughout the MS patient's life.  Will it last a month?  A year?  A decade?  No one knows for sure, or even if it's safe to put that repeated stress on the vessels by constantly performing angioplasty on them.  In short, as of right now, the unknowns simply outweigh the knowns, and a lot more testing and studies need to be done.

I might also point out that while I completely understand why someone with MS would want to run off to a foreign country for treatment, sadly they're not helping their own cause to have CCSVI recognized in the least.  When people go elsewhere, or have it done 'underground', their medical data and results are kept secret.  If people really want to help, get involved in the clinical trials and let your results be part of the solution.  A YouTube video of a woman balancing on one leg post 'Liberation Treatment' is all fine and dandy, but it's not scientific evidence and does absolutely nothing to help the medical community evaluate CCVI further.

Before I end this post, I'd like to mention the fact everything written here is after months of research on the topic.  I firmly believe education is the greatest weapon when battling any disease, in my case, it just happens to be MS.  I urge everyone to educate themselves before making any choices that could ultimately effect your health.  Don't listen to internet or media hype, listen to the facts.  Ignorance may be bliss, but it could easily cost you your life.

Be well all, and never give up hope.

Sunday, July 11, 2010

Life is crazy, thank God for good company along the journey.

I know, I've neglected this blog for far too long.  Life just gets so busy, you know?  This summer in particular has been extremely hectic.  I suppose it will come as no surprise I suffered an exacerbation in early June- I knew I was pushing my body too hard.  It's a fine line, really.  You want to push yourself to do all you can despite the MS, yet if you edge even the tiniest bit past that invisible line in the sand where you'd done too much, the disease wakes up and smack you around.  Let me tell you, it smacked me up good this last time.  I spent my 37th birthday hooked up to IV Steroids.  Urgh.  Talk about the one thing I didn't want for a gift.  

I'd have to guess this was my worst exacerbation yet, in fact almost 4 weeks later I'm still struggling to regain my footing.  The hardest part was the symptom I've dreaded most since being diagnosed made it's return- double vision.  That alone was enough to send me running to the Neurologist begging for IV Steroids.  It took about 10 days for my vision to finally return to normal (normal for me, anyway).  I think the fact it's been so dang hot is making it harder for me to stabilize, too.  When it's 90+ degrees outside, I can't even make it from the back door to my car without feeling like I'm going to collapse in the driveway.  

I'm still struggling with vertigo since the last relapse, which is very hard.  I've actually gotten dizzy enough that it's made me vomit more than once in recent weeks.  But... in every dark cloud there is a silver lining.  For me, that silver lining is some of the amazing people I've met in recent weeks who share my struggle living with MS.  I'm realizing more and more how much I need people in my life who truly understand me.  People to whom I can say "hey I need to go lay down" and they already understand the fatigue I'm feeling without an explanation.  People who have had to or are dealing with the dreaded 'shot nights'.  People who know what it's like to have random parts of your body stop working or start hurting.  People who can even laugh right along with me at some of the crazy MS induced mistakes I make during daily life.  I think that's why people seek out others similar to themselves in life- not because their existing family and friends don't love them or don't try to understand- but because some things you can only truly understand if you've walked a day in the other's shoes.  My MS friends share the same worn out, beaten up pair of shoes I walk in daily.

I also believe, for me anyway, God has brought these people into my life because He knew I needed them.  He knew I was on the verge of slipping into isolation and depression because of the toll MS has taken on my mind and body.  He knew finding others like myself, both to lean on as well as offer my own strength to, would give me that 'boost' I needed to hang on and keep going.  Hence the title of this post:  Life is crazy, thank God for good company along the journey.  I'm fortunate to be amongst the best company I could possibly be in.

One special note to a person I'll simply call C.N.:  Thank you, from the bottom of my heart, for being there for me.  I wish so badly neither of us had to live with this crap disease, but knowing I have you to turn to whether it be for support, advice, or even just to laugh with at the absurdity of it all makes it seem a lot more tolerable.  I will always be grateful you're in my life to walk this crazy journey with me.

Until next time...

Be well all :)