Baclofen, intrathecal Pumps and our dear DJ

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

[essdipity]

Thank you, Lu, for explaining this to our forum. It's so horrible that gabby, verbose me is left speechless. What an uncaring, maybe even criminal, infliction of pain.

My first thought is legal. A good malpractice lawyer is called for. I'm not the type to run to a lawyer for the small vexations my life has entailed, but something as outrageous as this would be another matter entirely.

Money is not going to solve DJ's problems, but it possibly could make her more comfortable now. Perhaps publication of legal action and award might shake up the medical community and help others avoid the misery she so needlessly must deal with.

Is any action of this type underway?

ess

[rendean]

Ess makes a good point about legal action. Her case would certainly qualify as medical negligence for not removing a defect pump. She has proven pain and suffering.

I'm like Ess and the world is too litigious as a whole but I know from working the defense side of lawsuits that DJ case is clear-cut with the appropriate attorney.

I'm so sorry she has endured such agony and suffering...this I know from my nursing .
There is no reason for her to have to endure such pain.  

Sending best wishes for an intelligent informed doctor to help with her many problems.

Ren

[Lulu54]

Ladies, if you look on line there are a large number of class action lawsuits already going for this problem against Medtronic.  The negligence in her particular case probably warrants her own individual action, but she will have to weigh that decision.  

For the immediate time she has to focus on getting her hospital records, getting her pump flushed and refilled with straight morphine and not baclofen, detoxing off the baclofen that's in her system, and getting her pain and spasms under control...it is a horribly complicated mess.


thanks for reading this,
L

[Sarahsmom46]

OMG, I am not one to jump on the legal train in most circumstances as things can happen.  But this is truly unconscionable and beyond a an administrative error.  Even if she doesn't want to go for legal acton at this time, a formal complaint needs to be brought against the OR staff or whomever was involved in this medically negligant situation.  

This is the last thing she needs to be dealing with, period!  

I do have a question about her allergy to baclofen.  Do you think she she would mind my asking?  I also have a documented allergic reaction to baclofen and wonder if more people than they report are having this problem with it as well.  

Please send our love when you talk with her.  She is such a dear lady and it really breaks my heart to see her going through something as unneccessary this mess her doctor's got her into.  

Julie

[Deb61]

Like Ess, I'm speechless.  I can't believe how horrible this situation is.  Whatever DJ does in regards to legal issues, I'll support her either way.  I do think this is a good example of a case with merit, however.  

I know she must feel very hurt by the doctors that she put her very life in the hands of, and angry that she's had to go through so much pain because her trusted medical team simply didn't listen to her.  Disgusting.  

[Karen99]

I wish the best for her.  How dreadful to have to deal with an adverse drug reaction and MIA equipment tip.

A Pit bull attorney can make short order of the work she needs to accomplish for herself now.  It's clear that negligence has had a direct affect on her health (damages).  Nothing like an attorney grabbing ahold of the hinnys involved and giving a good shake to get things done.  A good reminder for others in the "field" to keep their act together, and keep their brains engaged so others don't suffer needlessly.  

While I can appreciate the McGyver duct tape techniques in a pinch, surely she has not received her pain relief as she should have.  I hope that is done soon.

My prayers are with DJ.  

[Heather3418]

DJ needs to appoint someone to take this to court for her.  She does not have, nor will she have, the energy to pursue this herself.  She shouldn't sue Medtronic first, she should sue the hospital and the doctor's that were involved in this "cover-up."

She would surely be able to locate an attorney that will not bill her for any charges to take this to litigation.

I really think that a lawsuit should be pursued, because her winnings (which I believe she WILL WIN) could provide her with top-notch 24-hour nursing care in her own home; for the rest of her life.  I mean top quality care that could alleviate her worries of ever having to do things now, that she struggles with alone.  I know her family is there for her, but 24 hour nursing care, with top-notch medical personnel, could be a life-saver to her.
Of course, she should be part of the class-action suit against Medtronic.  

I am absolutely appalled at the horrific care that DJ has received.  I am sure that the damage done to her body is immeasurable.

I'm sure that DJ just wants to be well and treated properly with the PROPER equipment in her spine to help her pain.  I know that she is not the kind of person that WANTS to sue, but I believe it's in her best interest at this point.  The funds should would receive from a settlement, could make her years living with MS; a more comfortable and financially secure future.  In fact, she may never have to go to court at all, as I feel the doctor's involved and the hospital would be more than willing to settle out of court, to avoid the bad publicity.

I am just hearbroken by the injustice done to this lovely, courageous woman; that means to the world to everyone that knows her.  Her perserverance is remarkable and heaven sent.

DJ,, I love you with all my heart and soul.  You are a god-send to everyone that you have ever come in contact with.  How lucky that Lulu was, to finally meet you face to face.  It will be an experience and joy, that I know that Lulu will never forget.  I thank God that I have "met" someone like you DJ, if only on this Forum.  You give me courage to climb the highest mountains.

I would like to see this thread multiply with reply's from ALL the Forum members that read this Forum, to show your support for this precious woman we call, DJ.  I hope that everyone will post and show her your love and support.  It would mean the world to her.  She, I believe, is one of the most courageous among us.  We all can learn much from her.

Hugs to you, our dear Lulu, for letting us know about DJ and her current circumstances.  Lord how I wish we could all afford (and feel well enough to do it) to fly to a central location and meet each other in person.  What a glorious day that would be.  What great memories we would have to meet all of our "brothers and sisters" from this Forum.  

I drop to my knees, DJ and pray for you, precious one.  I'll never forget the day that Lulu introduced you to this Forum, just as I will never forget the day that Quix (Momma Bear)brought me here as well.  This Forum has literally changed my life and my life is much better, because of it.

All my Love to My Forum brother's and sisters.  Big Forum Hugs due all around....

Heather
(Sometimes known as 'Earth Mother' around here)  

[Wobbly]

DJ, I can't believe the way things just keep happening for you... my dear you should get someone there that can help with this... don't let this go on further... I hope that you feel better soon and that this will work out alright ... My Prayers are on the way and will be there everyday for you.  

Please take care and know that we are here for you and care so much for you.  This is just a horrible thing that has happened and I wish you could get some help to fight this.

HUGS
wobbly
dxd

[roncart]

Fist let me say that my prayers are  that God watches over you and makes your suffering go away! To be in pain is horrific enough, but to also have so many inept (and thats what they are) people making things worse for you is horrific also. I hope that you seek legal advice. I know that does not make your suffering any better but perhaps they will treat others with more care than they gave to you if you make them pay in some way. May God bless you. roncart (Carol)

[supermum_ms]

Dear DJ,

What a heck of a screw up, how bl***y dare they do this, if they did this to you they will do it to someone else, stop them if you can find the strength, knock them off the pedestal they think they deserve to be sitting on. There is no question of medical negligence, in your situation its clear they FAILED YOU!

They have a duty of care which was breached not once, not twice but three times when they also failed to take responsibility and imedietly rectify their errors, taking what ever steps neccesarry. They probably breached a few medical standards along the way, disregarded medical protical and procedures that are there to ensure patient safety, they failed even their oath to do no harm.

But you know this because your living with their mistakes, i really hope your anger is enough to give you the strength to make them remember who you are and what they did to you, they should never be allowed to forget. I hope you find a good advocate to take this battle off your tired shoulders, no one has the right to do this to you, you matter!!!

Cheers and gentle hug

JJ    

[ShadowsSister]

How can I even began to THANK EACH OF YOU?  You have enriched my life in so many beautiful ways. Lulu you have become my Sister,my Friend, my Favorite "Go to Person", I am so blessed that God put us together. In His Wisdom He knew I was going to need you & " Our Group" more than ever.

I feel so betrayed by Dr.---, I won't put his name out there.  It took a very long time for me to allow myself to TRUST not just this Dr. but any one in the medical field.
Again, you words of love and suggestions about legal stuff is so meaningful to me and you each fill my heart to over-flowing..

Lulu, thanks for keeping our gang uptodate. I might not be able to post as often or as much, but I'll be letting you know I have read your postings.

SENDING EACH OF YOU HUGS FILLED WITH LOVE {{{{~!~}}}} and daily Prayers....DJ

PS; if there are any LEGAL EAGLES reading this maybe you'll get in touch ???

[Lulu54]

DJ's request for legal advice is serious -  if you have some particular legal experience that might be helpful,  would you please PM her and help with advice on where to start?  We talked earlier and have to admit that neither of us have experience with the legal system,  :-)

[shermay]

Right, I just emailed this thread to my best friend in Santa Monica, who deals in all in various litigation, hospitals, mal-practice etc.,  I am due for a visit in the next 4 weeks for my vacation, am not sure where DJ lives?  But Sandrine told me no more than 30mins ago that DJ has a very good case, and will win - no doubt about it.  She is looking further in to it as I type this message, poor women it's midnight in LA, but she's on the ball all right.  She thinks that this would not even go to court, but be settled out of court because the hospital in question would not want the bad publicity.

Let me know L if you want me to follow up?

Debs

[Lulu54]

Shermay, check your PM's for more.  you are super - from the other side of the pond!  Amazing how things work out some times.  

Everyone else, DJ was really touched by all of your comments.  We spoke last night and she is on the ball doing her research before she sees the doctor again.  She will give you an update, or tell me what's up next, sometime soon.  In the meantime, please keep sending good wishes her way  - they are keeping her going.

you're the best!
Lulu

[sllowe]

Thank you Lu.

DJ, I'm so sorry for the treatment you received.  It's inexcusible.

With so much going on regularly, you sure don't need added on glitches of such a magnitude.

I hope the right path will show itself to you and that you get proper care with what you are facing now.

(((hugs)))
shell

[PastorDan]

Oh, dear heaven, how did I miss this thread?  DJ, my dear friend, I know you know that I pray for you all the time, girl, but I will redouble my prayers for you, your family, for all of your future medical providers, and for the crack legal team that you deserve!  Our state motto is taken from the words of Christ: "With God all things are possible."  May you see more proof of this each day.

[ShadowsSister]

Hi everyone. To say this past week as been Very Difficult would be a huge understatement.
I am still trying to wrap my Poor assaulted Brain around all that has taken place since last Saturday evening, when I opened the statement from "Medicare".
I will call them Monday to alert them about the "Baclofen Problem" so they can start to investigate on their end of this. I know for a fact that No Doctor, Clinic, Hospital.. etc... would Bill Medicare for drugs not used. There is a heafty fine at the least. To remove something that has been paid takes time and a lot forms. So I need to let Medicare know about the situation.

I don't think I am going to allow The Dr____ to do my pump refill on the 27Th. I have some time before it becomes necessary to do the refill. This will give me more time to try and find a New Pain Management Doctor... I might end up having to give up the "MORPHINE PUMP altogether, but There has to be other ways of addressing the high pain level... I am just not comfortable allowing Dr._____ to touch me or treat me from this point forward. But I have Never fired a Dr without having his Replacement waiting in the wings, so to speak.
What adds to my difficulties is I don't know which Base to cover next. I have never been in a situation like this before. I feel like I am Flying Blind, and one wrong move will throw me to the wolf pack to be eaten alive.
Monday I'll call my PCP and go see him. I want to have a tox screen done to see if there is any of the Baclofen left in my system, also we need to do something to counter act the damage being done to my Kidneys and the other organs.

Again, I have to say THANK YOU to everyone for the out pouring of your love & support. I don't feel quite so lost knowing I have such a great Support Group Backing me UP.

I want you to also know I am open to all suggestions. I think besides trying to get my health back  to where it was before as difficult as it was to manage, it was better than want I have now. I Need to Do everything I can to make sure this Dr. and Medtronic do No More Harm to others under their care. I believe I am not the Only one who has been Mistreated, in some way or another. They don't realize it but underneath the Pollyanna laid a sleeping Lion, who's wrath has been reawaken.. I have abused before but over the years I made a vow to Myself, that it wouldn't happen again with out my fighting back with all that is inside of me.

I know we have a Doctor or two in Our Group, I need to tell them that I am not angry at All Doctors. I am pretty sure none of my other Doctor would do anything like this. So please don't think that I am angry at the Whole Medical Profession, because I am not feeling that way at all. I Sure don't want any one to feel I am attacking Their whole Profession. I happen to believe that it is 1/2 of 1 % of All Doctors who could or would treat any of the Patients in this way. So I apologize if I made anyone feel uncomfortable by anything I have said..

Well my Dear friends, I have taken far too much of your time, so I'll sign off for today with more up-dates to follow... I Pray everyday that each of you will start to feel stronger and healthier with each passing day. I hope you each also know that The Love filled hugs I send out are really heart felt. I am so very Blessed to have you in my life...
Thank you to "Our Flower Ladies" for all their Hard work keeping our Forum and Group running so smoothly, you make all of us feel welcomed and wanted... That is a Big Job...
Love filled Hugs {{{{~!~}}}} and Daily Prayers...DJ

[Charley123]

I am sitting here totally stunned and totally weepy with what has happened to you.  I do pray that you get to the right doctors who will listen to you and help you as you DESERVE TO BE HELPED!!!  
You are a kind and generous soul even when you are suffering so and such an inspiration to me on most MSrible days, as you are to everyone else.  Your kindness reminds us all to reach out to others no matter how we feel.
Thanks for posting this Lulu.  Charley

[Mand125]

Dear DJ
This has all been horrendous! I hope you can get a new pain management doc quickly so that you can fire the old one.

I think you know that we all care about you and worry about you. You obviously have a very good friend in Lulu.

Please take care
Mand

[Lulu54]

Thanks everyone for the support you have shown DJ - this forum truly works in wonderful ways.  I am touched by each and every one of your posts in support of her.

you're the best!
Lulu

[ShadowsSister]

Hi, I wish I could say things are improving health wise. But I can't do that yet..
My Kidneys don't seem to want to come back on line as well as the other stuff.
I have made a decision, I just hope it is the right one.
I have decided that I am not going to confront Dr__, until I get some legal advise, and I am not going to let him refill my pump or anything else. Why would I go back to a Dr who would not be honest with me about so many things.
I will find a Dr. who will remove the pump and will use Oral Morphine until some thing better is offered. There is enough Morphine in my pump for a few more months, but I hope to have it removed before than.
I just don't think It would be in my best interest to continue to let a Dr, I no Trust in to treat me for any reason.
I feel like I have a ticking time bomb inside of me. Right now I am not getting enough morphine for the pain, but am scared that The Darn Pump might decide to kick in to overdose mode, which it has done to others..
Thank all of you for your support & Prayers.. It's only by the Grace of God that things aren't worse at this point...
I am scared, Hurt and so Angry, none of which is going to help me. I just don't want to start second guessing all my doctors or myself.
Debi, Thank you so much for all you are doing...
Lulu There aren't enough words to thank you for EVERYTHING.. With all my heart, I thank you for being there with me since Day one...
To all of you,..... I hope some how I'll be able to give back to each of you what you have all been so kind to give me...Please know that You are all in my thoughts and daily prayers. You are like an extension of my family... I'd really be in a BAD Place if not for "Our Group...
Take good care off yourselves, know I am here for each of you too... Now have a Wonderful Week of Sun-Shine and Cool Breezes, and feeling better with each day that passes.
{{{{~!~}}}} DJ

[Eyesnlegs]

As always I am late joining this thread my only excuse this time is I have been on my hols.

I have just read the entire thread and cannot believe what you have been through. Many years ago I went through a problem with a drug reaction that caused my liver and kidneys to swell and boy was that painful but NOTHING in comparison to what you have been through and not even just an adverse reaction but a medical assault also. I feel so very angry for you like others on here.

Other friends on here have said so much I will only add to this by sending love and hugs across the blue sea.

Thinking of you, feel better and stronger soon.

Love and (((hugs))))
Pat
x

[michelleric]

I have just read this post, and I have to tell you, I just feel so much for you.

The pain you are enduring, just "shouldnt" be. I am SO HUGELY sorry for all you have gone through, and all that you are going through.

My thoughts and prayers are with you and I wish there was something I could do to ease all the awfulness you are experiencing.

Big huge hugs to you,

Your Friend,

Michelle

[Guitar_grrrl]

I haven't even been lurking for a few days, and this thread leaves me speechless and weeping...

My heart goes to you, DJ.

Guitar_grrrl

[Ufrustrated2]

Thoughts and prayers are with with you.  Actions like that make zero sense to me, I really mean it.

I won't write down what I think about your doctor and that situation. certain problem solvers come to mind, yet a crack legal team would be a good legal step in the right direction.

keep the lion awake, there are reasons why God gave us such capabilities ya know ...

Hope you rest well, ...

[bonek]

Jaki ogrom cierpienia niesie sama choroba ,niestety tylko  chorzy wiedzą . Biurokratyczne procedury  zwykła znieczulica  ,dodatkowo pogłębiają cierpienia.
Wszystkiego dobrego  DJ

[Janette2836]

I too have been away from the forum for a bit but wanted to let you know my heart hurts for you!  I will pray for you & the decision you have made.  I also will pray that you find legal advice that will assist you in making those decisions.  I know you don't want them doing this to anyone else.

Take care sweet friend.
hugs
Janette

[uk2]

Hi

I am so sorry for what has happened i cant believe this dr has allowed this to happen i dont know what else to say but i am thinking of you and praying for you i am myself having trouble with baclofen and wondering if to give it up as its side effects are not good.

sam x

[Erin0313]

Dear DJ,

   I am late as always too. Just now seeing the update from Lulu and after reading all of the posts I am sad that you are once again (or still) suffering and so very ANGRY that none of the professionals even came close to helping you.

  You have been an inspiration with all you have battled and to hear this recent account of events makes me want to find just one of your doctors and shake them while screaming not nice things right in their face. Oh boy, I guess I am angry.

  I hope that you are able to get this pump thing straightened out soon so that you can get some relief from the pain and once you are doing better go get those bastards the only place they feel it - in the wallets.

Hugs & Prayers,
Erin :)

[bonek]

A ,co sądzicie o takim leku jak Sirdalud