CCSVI and the lure of the "benign"

One of the points CCSVI advocates make is that the treatment is benign, that there are few, if any risks, that it may as well be done as not.
I'm a nurse and I have to tell you the thought of introducing a catheter to any part of my body (but especially the vascular system) fills me with a bit of fear.

I know I'm a chicken. All of my rellies died of cancer (just about) by the time they hit 60.  So the fact that I am on a long term immune system modulator gives me pause, lemme tell you. Every time I inject the copaxone, I think about how a. they are not completely certain how it works, b. it doesn't seem to slow the eventual progress of the disease, just reduce flare-ups and maybe lesions, which everyone agrees don't really predict disease outcomes, c. how since I've been on it, my body doesn't swell up with mosquito bites any more and how weird that is and how there may well be cancer cells sneaking around my body at this VERY MINUTE looking for a good place to lodge and grow, happy and healthy.

I'm on an antidepressant, too - started before my diagnosis, and it's supposed to be doing something for me but again, no one knows what, or whether the depression is caused by the MS or just a reaction to it or to the constant pain, or whatever.  I've withdrawn from antidepressants before and it is some scary stuff, believe you me. They obviously do something altering to your brain and I'd feel a whole lot better if somebody could show me the "insert tab a into slot b" directions for how it worked. But they can't.

Why does the thought of a catheter thingie seem more risky than these steps? Well, I've seen the damage from bad insertion of things (some jokesters might say  - like my kids...- but I love them, so perhaps not..) I know that whenever you put something into your body of the metal or unnatural kind, in places where things are not usually put, you get some damage.  Could be little damage, and worth the risk - such as when you get a screening colonoscopy (which also result in some poor outcomes, however) - given the risk of the alternative. Placing a stent in your heart, for example, is not just one of those things you get done cheerily and wander off to be your regular self.  There is damage caused by the manipulation of tissue that is normally protected.

I've always had troubles with my neck, being a short person with significant stenosis and a lesion or two back in the spinal column. I fear chiropractors manipulating there ever since I heard of strokes caused by neck manipulation. So the thought of a snaky tube going up through those vital spaces fills me with fear.

And yet, the thought of a potential cure for the awful symptoms I live with every day is tempting. Being part of the study that is being done on all those here in Canada who are being followed up for the "treatment" interests me, too - after all, some days I don't feel I am much use except as a medical curiosity.  Every day I take up my arms in battle against MS.  Sometimes it is wearying.

But I've never viewed the procedure as benign.  And of us who have had urinary tract infections after a catheterization know of the risk of introducing illnesses.  Many people coming back from India where they have had medical care end up bringing along a superbug with them, which then spreads throughout our hospitals. And others have other bad results, from spasms to neck problems to this latest report - death by stroke.

This poor woman.  She was basically healthy, had symptoms that were nasty, and the certainty that they would most likely get worse.  But the hope of this "benign" procedure was held out to her  - and she chose it - and she lost, horribly. I know everyone has the choice in this case, but isn't there some responsibility for the medical profession to give the right advice? And maybe she received all the information and decided to continue, I don't know. But if you read the article, some interventional radiologists don't think they should be offering an untested procedure.

Brant-Zawadzki refuses to do the procedure even though people with MS are clamouring for it.

"I do think that physicians themselves believe they're helping these patients, but unconsciously there's an enablement going on of what could become self-harmful, if not a truly self-destructive process."

http://www.cbc.ca/news/health/story/2011/07/08/multiple-sclerosis-ccsvi-death.html

I've met a lot of people with chronic illnesses who do become self-harming with the various treatments they take - before I was diagnosed, I was told I had fibromyalgia.  One of the members of the support group was choking back guafenisin to treat herself based on a protocol someone had created - a dangerous idea, as the side effects are grim. Others are taking opiates for the pain, gradually increasing the doses until they become at risk of falling or doing damage to others.

It sucks having a chronic, incurable disease.  We all want a magic pill.  But we need to be sure it isn't more of a Snow White apple, laced with more poison than benefit.

My deepest sympathies to Maralyn Clarke's family.

Hope vs. despair

I've decided to get a puppy.  My family members probably think I'm mad.  After all, I had a perfectly wonderful dog, Dudley the magnificent (in the photo) who I loved to bits, and I sent him away to live with another family shortly after my diagnosis.  The thing was, I was fully prepared to be crippled and in a wheelchair after a year and didn't want to subject a poor wee doggums to the boring life that would mean.  Dudley went off to a family of five, with three cheerful little girls who promptly dressed him up in doll dresses and hats and who he went to happily, used to the pell mell of a herd of Bichons in his parental home.  My quiet little place must've bored the poor fellow, so I'm glad he's put his paws down in a place where he will be loved to excess. (and which has a fenced yard!)

I have cycled through pets, looking for companionship in a container I could manage.  I have my ferocious parrotlet, Dora, who tries to run my life and who lives a very spoiled existence indeed.  She's sweet and bossy and prefers me to any other landing surface which is adorable. But she's not quite enough.
This puppy is a vote of confidence - in me, in my ability to deal with this disease, in my ability to live alone and succeed at it. He's sweet and roly poly and all that, but his genes are smart, and I know if I work at it I can train him to be a great companion animal. He will make me walk even when I don't really feel like it, he will make me laugh also. I need this, more than I can admit. Living alone with an unpredictable chronic disease is lonely at times.  It's not that I want a person around, though, necessarily, though I like that.  Sometimes I just need a mute companion who will live and breathe around me and care for me.
I do hate the unpredictableness of this disease and wonder about taking on a new responsibility - but then I have hope that the progress will be slow, that I will have time to truly enjoy my new little buddy, exploring new places through dog's eyes. I have hope.

MS clinic day

Well, well, well. Or rather, not so well, not so well, not so well.....
Today was my biannual MS clinic day, where I get to meet with the neurologist and the MS nurse to discuss my various symptoms and the nothing they can do about them.
So today, I talked about my right leg, and how it needs a fair bit of encouragement to get moving. We did a little tap test to see if I could tap my foot. Left foot - Allegro. Right foot - Largo. No wonder it seems to be having troubles walking. My right hip flexors: unimpressive. Left: better. Balance - well, It was handy the walls were close by.
None of this is stuff I wasn't expecting, of course. It's just a bit interesting having it evaluated and finding it considerably worse than 6 months ago.
So I asked about the numbness thing, the weird Stay-Puft Marshmallow feeling that surrounds me all the time, puts me at risk of burning myself, etc., ruins my good time...(although searching for the spot where DA can feel today is a fun game). The MS nurse, smiled at me then looked away and down...."well," she said, very carefully and slowly, "Usually the numbness goes away, but when you have had it for such a long time....it...usually...stays..." Both she and the neuro were very careful to offer no hope of any recovery - the best I can hope for is a slowdown of symptom development. Not that that has been happening to date, mind you.
So, Stay-Puft I am, and Stay-Puft I will remain, I guess. They did like my idea of the nifty rollator, but I might let my hair go grey first. It just seems wrong to go rolling along with brown hair. Fortunately, it's just a dye job, so I won't have to wait long.
Overall outlook: Life will suck and then I won't die.
Well, at least I won't have falsely raised hopes!

hope Springs eternal

The sun is gradually warming the ground and the breezes are often (not always) warm enough to hint at the potential for summer.
I'm drawn to head outside, to feel the air on my skin, although I can't, to feel my hair blow in the breeze, though I can't, to feel the growing grass between my toes, though I can't.
I want to hug my daughter, though I can't, tousle my youngest son's hair, though he's in Scotland and he wouldn't let me anyway, laugh with my middle son, though he lives far away. I want to go back to work, though they won't have me, dig a vegetable garden, though it would hurt me to do it, grow roses, though I seem to kill them randomly...

Despite the multiple barriers I face, something is tickling under my numb ribs. It's like a tiny plant, reaching upwards toward the light, and every day without pain makes it grow quicker. Maybe, maybe, I am getting a bit better. I hardly dare say it, lest I jinx it. But maybe....

Revenge...

"They" say the best revenge is living well.
I've been thinking revenge-ful thoughts lately and they are both refreshing to daydream about and somewhat sad in reality.
You see, living well is not really an option for me. I can live happily; I can live thinking of joy; I can nap freely (part of the MS so not really as much of a treat as one would wish!), but reality is not so much of the living "well" thing, more of the living "poor but cheerfully" thing. You see, they still haven't figured out my EI. So no money for DA. And I'm still not better, although I look wonderfully rested and plump enough to cook from enforced inactivity. I popped in to work today and honestly did not feel the tug, the need to be there, the need to be important there. I am already redefining where I need to be important, what I need to do to make life worth living. I have my plots for volunteering and I vow that if my house sells I will get myself to Kingston ASAP and help out where I can, finally free to help as I wished but couldn't do while working.
Of course, I beat myself up about my shallowness about not volunteering before, not realizing the fatigue I was feeling was part of this disease....
Today, though, I thought I might feel a bit of joy about a wee push of revenge (a cheery smile and hello) towards someone who had treated me badly at work. Instead, I felt sorry for the guy, trapped like the cat in an uncomfortable cage of his own devising. I could fly away, like the bird, smaller, maybe less significant, but so much happier. Even if my wings are weak, and I fly into a wall - at least I get the chance to spread those wings.