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:(

25 comments:

  1. Man, this sucks. As if having MS wasn't bad enough.

    For what it's worth, though, you're doing a great service to the MS community by sharing your horror story. I've always felt that a baclofen pump is in my future. Because of your experience, and the fact that you are sharing it here, I will go in a much more informed consumer than I otherwise would have.

    Thank you!

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  2. Its serious business mitch. Put a lot of thought into it. Lets face it, its a business!

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  3. After reading your well-written and informative article about the pump, I've decided that I can't put my son through this. I've cared for him, myself, for the last two years (traumatic brain stem injury 4 yrs. ago)and administer his baclofen & tizanadine through his peg tube. He can not talk, nor do anything for himself, so couldn't make me aware of anything he was going through; he'd only moan. I will go with my gut feelings after having read your writing and will no longer research this option. He hasn't had a good hospital experience, yet, and neither have I, having been with him. I'm amazed at the ineptness of medical staff. I guess that I will just continue to pray and do the best that I can do for him. Thank you for your assistance and I hope that things get better for you. I believe that God wants us all to teach that which we know and you, sir, have done just that. Blessings to you and yours, Dawn (had to sign as anonymous as don't know how to do other things that were offered. My email is dawnmarie053@yahoo.com, should you like to respond.

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  4. the ITB pump almost killed my daughter when the catheter kinked, the whole pump experience has been horrific and has not provided any real benefits, i would advise anyone seriously thinking about it to SERIOUSLY RECONSIDER. if i had known about the negative aspects (which the company glosses over), i would NEVER have signed for it. Now that i know more, i feel as though i have signed her life away... please consider this procedure very very carefully.

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  5. so sorry for you. going through titration process with nonverbal 20 year old son. wasted almost a year of battery life with no benefit yet. i will be thinking of you during our own journey.

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    1. George died on March 3. Putting the pump in was a tragic mistake. From the first surgery until the third he got no pain relief, it paralyzed his legs never allowing him to ever stand or walk again, his pain levels in his spine became unbearable. He was never a candidate for the pump but conflicting medical advice caused him to try it. The constant doctor visits to try and titrate, the failures, the mental anguish, the recuperation from the surgeries all effectively caused the end of his life.

      It took away all his hope, his ability to turn over, to exercise his legs. The fear of losing the catheter for a third time took away the little movement he had in his body. He became a prisoner of not only MS, but the monster pump. The literature is so misleading, and the doctors were of little help in making a good decision. I agree...George's life was signed away when the pump when in.

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  6. Oh, my gosh, I was just going to write to George and see how he was doing and I was met with this announcement of his passing. I'm so very, very, very sorry for your loss. I know that now you are missing a most importance piece of your life. Your son and I spoke on the phone on a few occasions. He was a bright and brilliant young man. He told me that before becoming ill he was married with wonderful children and was a contractor. His illness took a toll on the marriage and his loving parents took him in, caring for him, so very well. I know that before becoming ill, his life was full. I know that he loved his children and anguished over the fact that he could no longer be the father that he wanted to be for them. I spoke to a respectful man. A nice man. A man whom his parents could be proud of. And his parents? Well they are responsible for raising such a fine young man. George spoke so highly of his parents and the sacrifices they made for him. And what did George do for me? Well, because of what he shared, he saved MY son from going through the agony he suffered. I did thank him. I told him that I was so glad that he wrote about his experience with the pump because it helped me make my decision and I did NOT opt for the pump for my son.
    I do know this. I know that George is in a place where there is no pain, only the greatest joy; that of which none of us here on this earth can fathom. I believe that as his parents miss him with broken hearts, George is preparing their condo in heaven! He'll be there to greet both of these people who not only raised him as well as any two people could, but sacrificed their later years to do whatever they could to care for George and ease his suffering.
    I wish that I'd had the chance to actually meet George. But I know that he's watching over his children and he stops by to look in on his parents. Watch for butterflies. They may be from George. Just his way of saying "hi, I'm thinking of you".
    For my son, Chad, thank you, George.
    Respectfully, Dawn Ausborn

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    1. Dawn,
      Thank you for your wonderful and kind words about George. Of course, coming from me, his Mom , they are expected. Coming from you, a stranger that he connected with, they are truly meaningful. He was all that you said and so much more..a truly charismatic, kind, loving human being. We miss him beyond understanding.I only wish that you were not experiencing the same kind of pain as you care for your son.
      Hilda

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  7. To George's loved ones:

    Thank you for keeping this page up. I used to follow The Greek quite a bit, but I came back here today because today my neurologist suggested I try the baclofen pump. I remembered that George had a horrible experience with it, and came back to refresh myself on what he wrote about it. This was important for me to see as I make my decision. George is helping me even from the other side; thank you for allowing him to do that by keeping this site running.

    Lainie

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  8. Lainie,

    I do not know your condition or where you live. The third catheter stayed put, but all the previous trauma had exacerbated his condition beyond repair. Many doctors refuse to service the pump even if you have it put in. Most hospital staff knows nothing about titrating or caring for it in an emergency. He became like a man without a country. It was AWFUL. The rep made it sound like a panacea and no big deal. PLEASE, PLEASE consider this pump very carefully. There is a paper written by a doctor (we read it after surgery) and she delineated all the failures and trauma of the pump. It completely took away his independence and any chance for improvement. He regretted the pump decision and it truly caused him the final choice he made to die.If you have MS and it is not stable for six months, and is progressive, the last doctor told George that he was NOT a candidate for the pump. first time we ever heard that information....too late.

    I will regret my encouragement to him to go for the pump and believe the doctors who told him the same need to revisit the information re the pump. I will die bitter over the added suffering he had from that pump.And I will keep his site going as a truibute to George.
    Hilda

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  9. my sons catheter came out of his spine. without any symptoms. my sons baclofen pump has been in his body for years, matter of fact he was up for a new one. His dr said he needed a x-ray. The xray found the catheter just under his pump.. I immediately told the dr to completely remove it. I don't know how long it had been that way.my son could not tell me of any problems. He got the baclofen infusions- where did the baclofen go? will it affect him in the future? I wish I had never had it installed. I am glad I found this site, may George legacy live on.

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    1. As I understand it, the medicine is such a minute quantity that it is just not a problem.I am surprised that your son did not go into Baclofen withdrawal.You need to document this failure with the FDA as well at the Medronics company.

      Of course they will tell you that there is a warning telling you the the catheter may come out or kink. It appears from our experience, and now yours, that we must be ever vigilant in accepting the information regarding devices and medicines as well as be our own experts.

      I rue the day that George ever had the pump installed.
      Good luck to your son and I hope that his spasticity is under control.

      Hilda, George's Mom

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    2. Thank you. Hilda My son had no withdrawal symptoms.. I feel if he had been x-rayed at visits it could have been caught. It is a puzzle to me. Thank God my son did survive. He is now on oral baclofen.

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  10. Thank you for continuing to share your son's horrific journey. The pump has been strongly suggested for my son (a 4 year old non-verbal boy with cerebral palsy, due to brain hemorrhage shortly after his premature birth). I've been struggling with the options, and this is eye opening. Bless your family, and again, thank you for maintaining the site! Virginia

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    1. Virginia,
      I cannot reassure you or speak to the issues your son has. I can only reiterate that the pump was a nightmare for George, and I have heard, from others who have MS. It does seem to reduce spasticity for wheelchair spinal injured. But, the titration, surgery and finding doctors who will treat the pump and adjustments is a difficult situation. Also, many states are now requiring urine sample for the drugs in the pump, treating them as oral drug addicts.
      You must research carefully, and speak to others whose children have the pump.
      You have been chosen to be a hero for your son. His life is in your hands and it is a terrible challenge. May you be blessed with the courage, love and stamina to help him always.
      Our George has been gone from us now for a year come March 3. His suffering was terrible. We miss him so.
      Hilda, George's Mom

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    2. If I could turn back time I would have never gotten the baclofen pump for my son.. One of my friends daughter passed away 3 years ago, she had spastic quad cerebral palsy too.. She was a patient at the clinic where my son went. She told me she felt her daughters death was caused from the pump. I pray for her often.

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  11. Please reply to help me. I have the baclofen pump for cerebral pasly. I am takling moriphine er 2 times a day and 6 lyrica a day. My legs hurt so bad its unbelievable. Even on morphine they hurt. I can't figure out why. Could baclofen through my pump be actually causeing burning. My leg pain is non stopping like a electric ciruct. It never stops, Its always there. The pain is so bad it hurts my memory. I cant remember if i did some thing because i keep feeling my legs so its hard to pay attention to things. The doctor lowers it 3% or 4% and it didnt get any better. he is scared to move it in big percentages. I need help. Life is so painful. My legs feel like they are eating them selfs in a way. Please provide advice. dustinb85@comcast.net god bless! Could cerebreal palsy be this painful just because or is it the pump?

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    1. Dustin,
      I am so sorry for your suffering.
      George has died and obviously cannot answer your questions.
      Your leg pain sounds like nerve pain, but only your doctor can decide that and hopefully help you. So sorry.

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  12. If we could turn back time it would be great. My son, a teacher, has cerbral palsey. He was on any drugs, dealing with the spastacity by exercising and stretching. Then the docyors suggested baclofen, first oral, then a pump. At first it was great, but then he had problems...depression, weight gain, heart problems...all treated with the addition of other drugs. Finally, he went into a coma and almost died. We weaned him the drugs over an 18 month period. Baclofen withdrawal is a nightmare beyond your wildest imagination. He still is not fully recovered and can no longer teach or drive a car. So be careful with baclofen and the pump. We believe it was the cause of my sons problems.

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  13. My husband had a baclofen pump put in 2 years ago and it has been a 2 year nightmare. The pump actually was working it way out of his body. We bandaged it every day and kept telling the doctors (the pain doctor, the surgeon, the neurologist and the family doctor) it had to be removed. The pain doctor said "no, we will move it to the other side of his stomach. By the time it was removed (because we demanded it), it was sticking out of his skin 1/3 of the way. He now has had it out for 30 days and is on the road to recovery from this horrible experience. I would caution anyone thinking of getting the pump. I took a picture 1 hour before surgery and anyone I showed it to was they were shocked.

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    1. I have heard many stories regarding the difficulties patients have endured from the pump. Few of these are reported by the pump reps, we heard none, and all should be reported to the FDA. I am so sorry for your husband's suffering, but glad he is recovering. Unfortunately, between MS and the pump debacle, my son suffered awfully.Too late for him, but hopefully others will not suffer the same fate.

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  14. The Baclofen pump is the worst nightmare and over time it will give you mental problems also.

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