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Medtronic Intrathecal Pain Pump Replacement

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Posted 9/25/2015 12:35 PM (GMT 0)
My 30 year old daughter had a Medtronic pain pump implanted for control of neuropathic pain in 2009 at MD Anderson in Houston, Texas. The pump battery is nearing end of life. The pump will need to be shut down or replaced in about 2 months. She had private insurance when the pump was installed, but is now only covered by Louisiana Medicaid (Amerigroup). There are no Medtronic providers in Louisiana who can replace the pump and Louisiana Medicaid does not pay for out of state services. The pump has been a God send. The pump is administering a small volume feed of dilaudid which keeps her pain at tolerable levels. She is not taking any oral pain medication. Going back to oral meds would be a major setback. The side effects of oral pain meds would have a devastating impact on many areas of her life. As a paraplegic with a colostomy, she has a medically complex situation which is easily knocked off balance.

Do you know of any providers or funding sources that can help get her pump replaced? The doctor managing her pump right now does not accept Medicaid, so all costs are paid out-of-pocket.
Posted 9/25/2015 5:54 PM (GMT 0)
Hello & welcome to the chronic pain forum. I am very sorry to read what your daughter has going on with the need for a replacement pump. Unfortunately, that is the drawback to pumps is the battery situation. Hopefully one of these days Medtronics will come up with a model that does not have a battery so patients are not faced with needing a replacement.

I do not know of any organization that would fund something like this. The biggest hurdle is the amount of money involved to get one of these pumps implanted. The are a super expensive piece of equipment. Short of your daughter relocating to a state where Medicaid would cover pain mgt & the pump revision, I just do not know what else she can do. We are seeing more states where Medicaid will not cover pain mgt..

Has her dr began weaning down her dose in the pump? I know you say she is on a small dose in her pump, but keep in mind the Dilaudid is in a concentrated form & much stronger than you probably realize. Hopefully he can reduce her dose enough to maintain her on oral Dilaudid.

Take care.
Posted 9/26/2015 12:55 AM (GMT 0)
Thanks for the info Susie. Her doctor is weaning her down. I know that costs vary widely, but do you have any idea what a typical charge would be for the pump? For the procedure?

Her pump rate was 4 ug/day. We are all hoping that her neuropathy does not spike as she weans off, but we want to run all the traps on her options in case her pain level flares up. She has worked so hard to overcome so much in the past few years. Before the pump, she would reach a level 9 almost every day. We can't imagine her having to go back into that dark place again.
Posted 9/26/2015 9:46 AM (GMT 0)
Contact medtronics personally and explain in as much detail as you can. They're going to be your best source of where to go for help. If you have not been in touch with Amerigroup do that as well and see if its at all possible to override the no PM in light of your daughters severity of conditions and get the actual deciding people not customer service rep who won't have any say in deciding and likely won't even know what your talking about. Get in touch with the Americans with disabilities org and personally I would e-mail my congressman just to touch base and let them know what a piece of work this is,you would be surprised at how far reaching they can go if it's something that will look good on their record about re-election time. Speak to the hospitals social worker or patients advocate to see if they have anything to offer.

Its a shame she has to be put through this. Good luck!
Posted 9/28/2015 9:36 PM (GMT 0)
Webbtj, most big companies like Medtronics have programs to help people whose incomes are low - say, 400% of FPL in some cases. We rec'd my husband's RA medication that had to be infused from Johnson & Johnson for free, plus the dr. agreed to a lower copay for the two hour infusion (yay to J&J!). There are also a number of charities that help with medical costs, just do an Internet search, you'd be surprised at how many you'll find. I know it sucks to be in the position to need this help, but honey it's there, and I encourage you to take it! If you need help finding anything let me know, people say I have a gift for finding things lol
Posted 9/28/2015 11:26 PM (GMT 0)
Thanks for the great advice. We will contact Medtronics and Amerigroup and explore your other recommendations also. Hopefully, she will wean off of the dilaudid without any problems. If not, we will find a way to get her the replacement pump.
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