Friday, September 28, 2012

Why Do Doctors Say Stupid Things?

     About six months ago I went to see a neurologist.  Not just any neuro, this guy was Chairman of Neurology at a major hospital and college,  and had been for umpteen years.  I can imagine the various degrees of ms and it's complications that have made it into his office.  I anxiously counted the days until my appointment only to conclude afterwards there needs to be a "jump in my body button" that I can press when a neurologist rolls his eyes to patient ideas and recollected once again just how immune these guys are and how they don't get it, especially when asked an opinion of any therapy outside of the "box."
     I had waited several months to visit this neurologist.  Unless a patient with ms is having a severe life threatening attack, then it is typically hurry up and wait.  Imagine having a cut in your finger requiring stitches and having to wait a month to get it stitched.  Naturally by then it's too late and hopefully it will heal on it's own.  Now on a grander scale imagine being unable to walk, and waking up one morning and feeling that the paralysis in your legs is creeping upward above the waist.  Panic and anxiety quickly control your mind and the sensation becomes more pronounced.  Your stomach churns, your palms sweat,  your eye twitches, the numbness in your already numb hands increases, you lay in bed unable to jump up and grab the phone, horrified you watch the clock from the current time of 6am until the neurologist office opens at 9am. Youkeep your cell in bed for emergencies and start calling at 8:30 just to see if someones in, but the answering machine tells you nobody is there and explains that  if it's a life threatening emergency call 911.  Hmmmmm.  Depends who is defining life threatening, considering you can't even get up on your own it sure as hell is threatening and not much of a life.
     Finally 9am rolls around, you dial repeatedly but keep getting the machine.  Now feeling hopeless and helpless you continue to hit the redial finally connecting, but only to find there are seven callers ahead of you! What! Anxiously you wait your turn, a human finally answers, she is chatting with a colleague and finishing a laugh as you acridly explain the whole situation.  "Medical record number please" is all you get from the other side.  Medical record number?  Please I am upside down with fear and just want to get in there, thinking for some crazy reason that the neurologist can actually help you.  Your first mistake.  "Lady please can you find me some other way?" "Name and social security sir?"  This is when I want to hit the button.  Jump inside lady, feel paralysis then let's see if you can feel me and try just a little harder you machine.  "Ok, I have found you, " callously she remarks.  "What seems to be the problem." Again you repeat the entire episode, as if the clerk is going to help, you picture in your mind telling the story to a tree outside and getting more of a response.  Without as much as a single sympathetic word you receive a " hmm" let me see.  "Doctor has an opening November 23rd!"  Doctor, I love it , as if he is some iconic world renown perfection.  Can't he just be The Doctor?  Great a month away.
     The fact that you have this creeping paralysis is NOT an emergency.  It is unfortunately standard ms progression, and is no shock to anyone other than you and those close to you..  So you book the appointment for a month away, hang up, and lay there, immobilized, alone in your thoughts, horrified, still paralyzed, wondering how you will get through the month, again believing, tricking your mind that you will actually get some relief when you finally do see the neuro.  Welcome to ms, the incurable, seething, loathing, frightening, cowardly, life sucking disease and it's medical society associated with it.
     So back to this neuro, I wait months to see.  "Doctor" will finally see me now.  The anticipation is killing me as for some odd reason I think to myself this is the guy that is going to help me, momentarily forgetting that 150 years has passed and aside from a pipeline of  symptom management fallacies and expensive drugs with side effect profiles a mile long the ms train keeps chugging along.  During the appointment the Chairman of Neurology ensues his run of the mill standard neurological exam, equipped with a $.30 safety pin for numbness testing purposes, all the while formulating his theorem before I am allowed to tell my side of the story.  "Please wait until I have finished my examination", he remarks.  Can't this guy do two things at once I think to myself.  Squeeze the fingers, tap the hands, follow the finger, same old shit.  Finally his interpretation reveals a stroke of genius.  The ms is advancing and there currently are no therapies for the progressive form of ms.  Only symptom management, again the biggest sack of bullshit in the world.  I would call it sedation rather than symptom management.  Take four of these every six hours and stare at the wall while someone wipes the dribble from your lips.  Body button please.  Jump in and feel what I am feeling, and then tell me this .  So I throw out a few "alternatives", outside of the ms protocol. Things like stem cells, CCSVI, LDN, antibiotics.  Wadda ya think?  No sooner than the words left my mouth, Doctor gave me the old librarian look.  You know the one where the eyes glare at you above the glasses, chin at the chest.  "None of these theories are proven, for example we know very little of stem cells, and,there is the possibility of growing a bone out of your chin or something!" WHAT THE F I think?!?!  Three cheers for the chairman! Genius!
     This Sultan of Neurology went on to tell me how in 46 years he has never seen a patient in the advanced stages make recoveries and only very subtle improvements.  Boy what amazing encouragement, and how dare you say something so negative and hopeless to a 44 year old man clinging to any hope he can find, his golden years stripped from him by this thief ms.  Where is that button for this mother f'er.  Feel this!  Feel what I am feeling then say that!
     So back to the car, tail between my legs, doing my best not to get depressed, letting out a cry and some obscenities, I think to myself  how a Dr can feel good about himself, saying such stupid things and other than a handful of scripts, giving me the same old nothing.  I guess being in retail my entire past working life, and not allowing a customer to go without being satisfied, I cannot imagine such shitty and worthless customer satisfaction.  Worse off I am not talking about a ladder here, I am talking about life.  Human life, feelings, family, survival, and all that goes with it.  Just getting to the appointment is a daunting task, getting a kick In the ass is so inappropriate
     Hope is all we have.  When told that there is really "nothing" to rectify this paralysis, it is easy to just say the hell with it and give in.  Giving in is not an option.  Let God ultimately take your breath away. Not "Doctor."  As difficult as it is remain focused on a goal, on the ultimate prize, keep going and be thankful for what you can do.  I have to remind myself this all the time.  I slip into the suck every day, and somehow comeback, but need reminding constantly.  I tell ya, it really hit me in the face when Dawn, a reader from North Carolina, a mother and caretaker for her paralyzed son who cannot talk reminded me how lucky I am to be able to speak.  Think about that for a second.  Who doesn't take speaking for granted?  Next time you blurt something out, think about how lucky you are you can talk!  As crazy as it sounds.  She would love nothing more than to have a conversation with her son.  Sure I get my share of bedtime, but at very least I can explain to Mom and Dad how I feel and have a conversation, even if it is from bed or whatever.
     If you haven't already, start appreciating what you can do and what you have, ignore hopeless chatter from the medical world and for God sakes as Jesse Jackson put it so eloquently, KEEP HOPE ALIVE,
      I leave you with a video of my friend Brock, who was told by his doctor that he would never walk again after a horrific accident left two dead including his father, and paralyzed Brock from the waist down.  Living on faith, determination, grit and super hard work, good friends like Mike Barwis who believed in him, Brock will be strolling down the aisle in the near future, regardless of what "Doctor" said.  You are the man Brock.  By the way, he has come even further since this video, much further and can walk unassisted several hundred feet.  So there!

Monday, September 17, 2012

Dont Wait It May be Too Late

     How many times do you come home from work, or for you homemakers at the end of the day exhausted, spent, beat up, wanting relaxation and peace?   It's only normal to feel this way.  I have experienced some alone time in the last 9 weeks where I have reflected so many experiences I would like to share where I felt just that and now this notion takes on a whole different meaning.
     Considering my last two surgeries have flipped upside down what little quality time I had during the day, my new day has been filled with the experience of either lying in bed or a short time in the lazy boy chair.  Either way it's about  90 percent sedentary.   To bring you up to speed, I am having great difficulty sitting upright due mostly to the MS etiology process, but to add insult to injury the two surgeries to get this damn pump working required cutting through muscle and cartlidge in my low back, thus creating a "pseudo" exacerbation and adding to the weakness in a profound manner.  No driving, sitting in chairs, long scooter rides at this time. Sitting creates a strain on my spine that in turn creates incredible pressure that in another turn forces me horizontal.  AS easy as it would be to just say the hell with it, I am doing the converse and I  have entered into a rehabilitation program with the hopes I can regain some fuction before the next surgery, yes another slice in my back to either repair or pull this pump out of me, haven't decided as making it through today is my main focus.  So rehabilitation requires great discipline.  I mean you want to talk about "manning up" as some ignorant to the term put it, this goes way beyond.  Imagine red hot poker sticks up your back while at the same time weakness and the ill side effects of medication transform you into a feeble, doped up, painstakingly exhausted bag of bones being put through a series of exercises that would hurt if there wasn't anything wrong with you!  All you can think of is getting back to bed yet somehow someway you just keep pushing almost in a divine manner.  Imagine, exercising with a belly full of muscle relaxants and pain relievers, its contraindicated!  Either do or die.
     Anyway back to my point.  You just get home your whipped, ornery, hungry and tired and your kid says he wants you to go ride bikes.  Sure you are perfectly healthy but your tired so you kinda give him the old"gimme a few minutes" until he is on to something else and you get your peace.  Let me educate you on what peace is.  Peace is laying in a bed that faces the outdoors and watching through a venetian blind a father your age riding his bike and his little guy behind him admiring him like he is Ghandi or something.  Not the kind of peace anyone would want to or should have to ever experience.  This peace, a result of illness, of lack of movement, of a relentless disease that comes out of nowhere and gives you more peace than you can imagine.  Peace is intentional, this type of peace is not peace at all. It's horrific, involuntary, forced, and fighting it only makes this "peace" worse.  It's not peace it's persecution.
      Change the rules and your mindset, fight your "tiredness", take the bike ride, go to the store, kick the ball outside, run to the corner, chase your kid, wash the car, clean the garage, run the dog, fix the gutter, play catch, get ice cream, whatever!!!! Damn it don't stop,  go balls to the wall because you cannot imagine what its like to spend your day in bed and then go to bed again, where you already have been all day, when everyone "normal"hits the sack.  It's no picnic believe me it plainly sucks watching the leaves blow in the wind, hearing the cars fly by, the kids laughing, all the while practicing your best Zen meditation battling your emotions, wanting nothing more than to be DOING, watching light turn to dark, repeatedly, getting out only when you have a Dr's appointment, your new "highlight.
    I was introduced to a really amazing family via a friend over the internet.  The Prudhommes have their own battle, as Ryan a 27 year old man, married to a wonderful supportive woman and father to a one year old son was out of the blue diagnosed with stage four cancer.  Ryan has exceeded his life expectancy since being diagnosed.  His secret, Living The High Life.  Take a lesson from the Greek and the Prudhommes; take that bike ride with your kid, kick the ball, live the high life, your bed will still be there when it's time.

Monday, September 10, 2012

Medtronics Intrathecal Baclofen Pump Tragic Saga Continues

     When I set out on this baclofen pump journey I never dreamt things could get so ugly, nor was I warned how invasive this surgery really is.  I wasn't aware a bone was removed from the spine to allow space for the catheter nor was I aware such a large incision was made through muscle and cartlidge in the back.  Worse off I was never warned about possible catheter migration, baclofen titration issues, withdrawal and the like.  Shame on me, shame on Henry Ford Hospital Neurosurgery, Shame on us both?  This process was presented to me like a walk in the park, and the Dr commented how his pump patients were among his happiest.  Naturally I was "pumped."  Either way I am worse off now than I was 9 weeks ago.
     So here I sit, no lay, while the pump beeps inside me reminding me of the four emergency room visits, fifteen visits for titration of the medicine, two catheter migrations, and three incisions including two in my back to get the catheter to stay in my spine, which it hasn't and currently is floating around my back like a buoy in a lake, non functioning.
     My several complaints as to this even more sedentary lifestyle seem to fall on deaf ears.  I have been basically bedridden since surgery one, and knowing how trauma to the body exacerbates the condition of a patient with MS never in my wildest dreams did I expect this incapacitated invalid state I would be in. "Write a book," "watch all the Marx Brothers Movies," was the solution from the articulate yet callous neurosurgeon, who by most likely accounts has never had to spend nine weeks and 90 percent of his day in bed while his four kids, his business, and the rest of the world continue to try to function and continue without him.
     Never in my wildest dreams did I see this kind of thunder and lightening on the horizon.  I was driving, working a half day, getting out in my scooter, and now I am doing nothing of the sort.  The pain and mental anguish I am experiencing is a test of only the highest magnitude imaginable.  Worse off, my only option is still another surgery.  Either I remove the components of this machine sewn inside of me, or I allow a third back slice and another shot at a hypothetical catheter anchoring, with no guarantee it will stay inside my spine.  So its either shit or shit basically, and very surreal at this point.  In fact it's a nightmare.
     The stitches in my back were to come out today, and as they stretch and yank and burn and pull, the spasm and spasticity go from worse to torture.  Naturally the Dr called in sick, par for the course, so it looks like I get to keep these bitches in another day and the black cloud hails overhead.  How can this be happening?
     Naturally I researched another Dr to get another opinion, and as luck would have it she was fantastic, knew every angle of the pump, has experienced fantastic results, and out of 200 patients has had zero catheter migration.  ZERO!!! What happened to me?  Surgeon ineptitude? Technical anchoring catheter problems? Greek spinal rejection?  What the hell is happening here?  Nobody has the answer.  Either way I am stuck here in bed, in pain, mentally, physically, with spasticity beyond belief, and no matter how much oral baclofen I take I am not experiencing relief.  I cannot sit in a chair due to weakness and spasm, can't work, drive or do any of those things I discussed earlier, and beep beep beep goes my dis-activated pump. WTF?
     There are many more details to this saga, and this is merely a synopsis.  One time in the ER they were so confused and had no idea how to program the pump that I had to call the rep on my cell, who traveled 160 miles to my hospital bedside to shut it down at 2:30 in the morning after wincing in pain for 6 hours prior!  Should I be responsible for my own care in an Emergency Room of Henry Ford West Bloomfield, a major Hospital?
    Moral of the story thus far: Do not take Medtronics Intrathecal Baclofen surgery lightly.  Do your homework,  Don't panic because your symptoms are so bad.  Don't rush.  Find competent and informed and familiar care. Find a surgeon that has done a ton of them and a Dr who has titrated the pump for many many patients.  When the new Dr saw what was in my pump she had never seen a concentration like that.  What the heck she commented?  Meanwhile I have made around 14 trips to the Dr who was titrating and as much as I really liked him, it was as if I was merely spinning my wheels and had no idea what was in my pump was not the proper concentration.  How would I?  I was relying on his expertise.
      Do these things and hopefully with a little luck you wont end up like me.  Nine weeks lost, worse symptoms, traumatized, incapacitated, pissed, frustrated, remorseful, dissapointed, anxious, and at times very hopeless just lying in bed, clear minded yet trapped in a body that is frozen like the Tin Man.  This is Bullshit my friends.  It's wrong, unfair, has stressed my family, my finances, and confused me more as to my purpose in this life.  The guy in this video is a putz but its the second alarm I get to hear every half hour, a reminder of this hell and the longer road ahead:(