Baclofen, intrathecal Pumps and our dear DJ

Lulu54

I'm not quite sure how to thread this all together, so hang in here with this tale - and I'm sorry its so long. I do  have DJ's permission to share this with you..................

Long ago DJ found that she reacts negatively to baclofen - a slow allergic reaction as this drug poisons her. It took much medical sleuthing and almost 40 trips to the hospital before the doctors figured out it was the baclofen playing h ell in her body.  Like other patients with allergies, she is constantly reminding everyone that she cannot take baclofen.  If you caught T-lynn's recent experience with oral baclofen and ending up in ICU, you have to wonder about this drug.  I know i do, because I am only 3 weeks in to using it. But that's a different story to post.

This year DJ has suffered horrific spasms, to the point that she has fractured vertebrae and ribs during these spasms.  Horrific doesn't even begin to describe the problems she has experienced. Her body has stopped working in so many  important ways - muscles, including the stomach, bowels and bladder are all seized up with spasms and not working correctly. Her legs are now almost 100% paralyzed and she is having to rely totaly on her own upper body strength to transfer from her chair.  Her arms are too tired most of the time to even type at the computer.

Her sharp physical decline started a while back and she has always assumed that this is due to her disease progressing.  She was also aware that her intrathecal pump for her morphine was not working correctly - the assumption being that there was a kink in her tubing.

Her pain management doctor went in this May and repaired the pump line and found that the tip for the pump was "missing" somewhere in her body - it was broken from the pump and could not be found.  The doctor super glued/duct taped her unit back together and sent her on her way with the missing pump part's whereabout unknown.  Her deterioration continued and she has been trying to cope mentally and physically with how this disease is treating her body.

This past Saturday she found in her mail box an itemized list of medical charges through her insurance company of what they paid for her pump surgery in May.  Among the things listed was not one, but two (2) units of baclofen that were injected into her pump during the surgery.  Present during this procedure was the Medtronic representative, who DJ says was insistent that she should have baclofen and DJ told her in no uncertain terms that she was not to be administered baclofen and the doctors also know that. It sure looks like the evidence points toward the medtronic rep and the doctor not listening to the patient or reading her history before the procedure.

Her pain management doctor  is out of the country this month, so she went and saw the office manager in person to question the charges for the baclofen.  Without hesitation, the office mgr called the doctor, and between the two of them they blamed it on a clerical error in their office.  Well the bill didn't even come from their office- it came through the hospital where the procedure was done and their office didn't handle that paperwork.  It all sounds like too much of a scripted answer to DJ (and to me, too!)

When DJ was speaking with her sister who is a nurse about the baclofen and surgical room protocol - her sister looked up the information on the Medtronic  pump.  Unbelievably, there is an FDA Class I recall on the pumps and the one implanted in DJ is among the models listed.  Not a single member of her team - and in particular the pain management doctor nor the Medtronic representative - mentioned this recall and the problems associated with the pump.

Supposedly Medtronic notified all affected patients by letter that they had this defective unit in their bodies.  DJ did not receive a letter - she certainly would have pursued answers then because she is much too smart about her body and the MS.

Remember folks, this recall happened almost two years ago and DJ still has this in her body and was just in the surgical O.R. for pump repair this spring and no one mentioned it to her.  She has an identification card that was given to her when the pump was installed a couple years ago that lists the model number and the serial number, so she is positive that she has a defective pump inside her.

So now she is faced with not one but two major medical blunders - the first being that she was given Baclofen during her procedure, despite her insistence that it not be used; and the second is she has a defective pump for her administration of pain meds that is not working right.

This is a real nightmare for this woman,  and if you caught her mention of not being in a friendly mood toward doctors lately, this should explain it all to you. She is so full of anger and rage at all of this that she feels she can't be a voice of reason here right now but  I know she is reading the forum.

We talked about this extensively and feel that if you have an implanted pump, please make sure that the unit you have is not one that has been recalled... google medtronic pump recall and you will find more informtion.  This malfunctioning pump has the potential to maim and/or kill patients.

Please think of DJ and all she is struggling with right now - the sense of betrayal from the medical system that she relies so much on is enormous right now.  And of course her physical problems continue to multiply.

If you made it to the end of this, thanks for taking the time to read this story.

as always,
Laura

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