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Old 09-29-2011, 08:58 PM   #1
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intrathecal pump w/ dilaudid...need help asap!!

My first time posting and need help. My friend has had a pump now for 2+ years starting with morphine but switched a little over a year ago to dilaudid because she was allergic. Got her pump filled every 3 months like clock work until this year. She went April 1st and tried again in July to get an appt and the said she didn't need it til end of Sept. She got it filled last Friday (178 days instead of 90).

Saturday 4 am woke up feeling crappy and nauseous. Got much worse she was getting very confused and couldn't get up. Called an ambulance. Spent several hours in ER the sent her home stating possible virus.

Back to hospital Sunday- confusion, very nauseous, body ache, muscle spasms, twitching. Sent her home again.

Follow up with family physician on Monday same symptoms plus zombie like eyes were closed but could communicate. Dr called an ambulance. She was finally admitted Monday PM.

Slight improvement Tues. The hospital thought GI problems. Ran all kinds of tests- couldn't find anything. Pain(pump) doctor came in Tues stating not pump related. Pump is functioning properly. Said patients can go up to 6 mnths between refills and this can't be pump related. She is still in the hospital with little improvement. Hospital docs can't find anything else wrong with her so pump doc came tonight to decrease pump but said it's not the pump again.

Can someone please suggest where I can find answers. She is kind of out of it to be of any help and the pain docs aren't helping any. Hospital has ruled out everything w/ blood work, scans. I want to know how long the dilaudid is effective after administered, would it have been less effective at the end of 6 months because they didn't get her in at 3? Am I crazy to think this is the problem?? I can't find much info at all. I called medtronic and they wouldn't help me because it isn't FDA approved to be in the pump. They said consult the docs but docs are denying any problems. I'm thinking they overdosed her due to the fact she went 6 months between fills instead of 3 like she always has and this is her body reacting if it lost potency and then they put in regular dose. They also said it takes 2-3 days for the meds to actually get into her body--is this true??? She was healthy with the exception of her back/pump before all this happened. The pain doc is claiming she is depressed and suggested a psychologist. So not the problem! Please if anyone has any thoughts I'd greatly appreciate it!! Thanks!!!

Last edited by icream; 09-30-2011 at 06:43 PM.

 
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Old 09-30-2011, 12:13 AM   #2
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Re: intrathecal pump w/ dilaudid...need help asap!!

Hi Ice cream. The big thing that jumps out at me is thet Ive been told by several docs and a medtronics rep that although they can put enough meds n a pump to last 6 months it should never be done because all meds have to be preservative free. Ive had a pump for 9 or 10 years, Just had it replaced 18 months ago with the new larger resevoir pump that can hold enough to go that long it should never be done. My PM doc, The surgeon that implanted the pump, the medtronics rep I met at both implant surgeries and the Home healthcare pharmacist that compounds my meds and that does my refills have all told me this and never allow me to go more than 90 days between refills. Who knows how the meds have broken down or how bad they have gone in in 6 months. Her symptoms sound as much like withdrawal as they do an OD or some type of poisoning. She needs to find a doc that follows protocol and going 180 days with meds being delivered to the spine without any preservative sure doesn't sound like protocol. I would start lookng for a doc immediately to take over the pump care and settings.

You have to be certified to implant a pump, but not to manage a pump. What are her docs qualifications. My doc got his med degree from GWU, completed an internship at Mass general in Internal medicine. In addition he completed a residency in neurology at the Mayo Clinic in Rochester, Minn., where he also earned a fellowship in clinical neurophysiology. Additionally, he holds a fellowship in neurointensive care medicine from Johns Hopkins Hospital in Baltimore, Md. I have no doubt he is absolutely qulified to make this decsion. I would love to go 6 months but its simply not safe without a preservative and you can't use preservatives in pump meds.

Find a better doc. Not every doc is as qualified as the next and nobody under her doc or that he is associated with is going to contradict him. 180 days is absolutely absurd. Did they draw any of that med and have it tested while in hospital or did she just get better when they changed the OLD stuff. I also have dilaudid and clonidine in my pump. Morphine is the only opiate a clinical trial was done on as far as being FDA aproved, But their are only 4 opiates that can be used in a preservative free state. Morphine, Dilaudid, Fentanyl and Suffentanyl. Their is nothing wrong with using diluadid, it's safer and more soluable in water than morphine.

I'm not saying you need an IVY league doc to manage a pump, but what are her docs qualifications and why are his thoughts so radically different than everyone involved in my care.
Good luck, Dave

Last edited by Shoreline; 09-30-2011 at 12:27 AM. Reason: grammer

 
Old 09-30-2011, 07:13 AM   #3
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Re: intrathecal pump w/ dilaudid...need help asap!!

Thanks so much for your reply. She called in July to get her pump filled (90 days) and the receptionist told her she had to wait til now to get it filled. I think they made a mistake when looking at her chart or something. I think they didn't look at the right date. She never went that long before and her next appt is supposed to be before Dec. 23 which is back to 90 days. I'm not sure what the docs qualifications are but thanks for suggesting looking into that because I certainly will. I was never involved until this episode happened but right now she can't fight for herself so everyone's trying to help. I do know this is the only pain management doctor in our area but maybe I'll see who is the next closest. Also the doctor that came to the hospital thus far is a physicians assistant(pa) which is also making me mad. Where is the doc!!! She's in the hospital it should be her doc.
As far as taking any medication out the PA said both time she was in visiting my friend that she wouldn't take any out. Every visit to the docs up until her appt last Friday they always took some out and then put new in. But she told me last Friday they didn't take any out before putting some in. She didn't get better when they added it! About 14 hours after they refilled it on Friday is when this all started! Are there any websites with specifics that you are aware of?? Thanks for your input I really appreciate it!!!!!

 
Old 10-01-2011, 01:04 PM   #4
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Re: intrathecal pump w/ dilaudid...need help asap!!

Wow. They drain my pump prior to putting the new med in. It doesn't effect the delivery because their are 18+ inches of catheter tubing that hold about 18 hours worth of meds. That's insane not to withdrawal the ramaining. My refill is calculated to do the refill when I get to around 3 ml left. The alarm goes off at 2 ml and then the pumps slow down. I would find an independendent compounding pharamcy and ask them about this. This sight isn't big on posting links to other sigts but I'm able to talk to the pharamcist that compounds my meds at any time. They are made the day before or the day the nurse comes to fill my pump. Something is really off. They also remove the old to make sure what's supposed to be left is actually left. Unfortunately with any opiate their are peole that abuse and I have read about people that withdrawl meds from their pump and shoot them up. All the stories I read about resulted in OD and death. So it's not something I would suggest or reccomend, My ratio is 25 mgs per ml so just one ML is more than 3 days worth of meds and would be more than enough to OD even a tolerant patient if given in a single injecton.

I really think your best recource for info would be a pharmacist that does this type of work, compounding meds for pumps. The actual opiates come in powdered form and are mixed with distilled or purified water close to the date of use. I can't imagine why protocols would be so different other than lack of knowledge. Good luck, Dave

 
Old 10-01-2011, 02:46 PM   #5
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Re: intrathecal pump w/ dilaudid...need help asap!!

The more i think about it the nastier it sounds, never draining the ramaining meds that have sat in a pump for 3 to 6 months. Yuk? It's amazing she hasn't gotten spinal memengitis from whats left behind. Because you not only have the meds, but some blood, fat and skin cells get pushed into the pump from the needle pasing through the skin and body tissue. What they withdrawal from my pump is always tinged with blood from the needle that pushes through the skin and a thin or maybe a thick layer of tissue depending on body mass and how deep the pump is, blood, skin and fat cells fill the tip of the needle as it's inserted and then gets pushed into the pump clearing the needle tip before the meds go in. Yuck yuck yuck.

As far as taking 3 days, It may take 3 days to feel an increasing depending on length of cathater and flow rate. When they added clonidine or make an adjustment in strength it takes me 27 hours to feel the increase as the reamining concentration is still in the catheter leading to the spine and that has to by cycled into the body before the new dose or mediation reaches the spine. The computer they use to read it knows exactly how long her cath is and will tell the doc or nurse operating it, how long it will take to feel an adjutment or new med. But their is always medication in that cath tube. Did they test her for menengitis, It kinda makes sense after never withdrawaling old meds and leaving it in for 6 months. She never truly has a a sterile clean solution if they don't drain the remaining old medication. It would require a lumbar puncture and testing of spinal fluid to DX menengitis. I will do some research on Protocols.
Good luck, Dave

PS. the protocols should be drasticlly different. Most docs and protocols error on the side of caution and don't push things to the brink of absurdity like never withdrawaing old medication and going 6 months. I did just read that all presevatice free meds must be refrigerated when stored, Obviously their is a reason fo rthis. BTW, they mix the powdered versions of meds with sterile sodium chloride, not water. Not that sodium chloride is a preservatice, The idea is to maintain a Ph balance between the meds and your natural spinal fluid. But the whole regrigeration thing screams something is wrong with going 6 months and not withdrawang ramaining meds.

Last edited by Administrator; 10-01-2011 at 11:13 PM. Reason: grammer

 
Old 10-01-2011, 03:23 PM   #6
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Re: intrathecal pump w/ dilaudid...need help asap!!

Thanks so much you are definitely going above and beyond for me. We are in the US. I thought it was wierd when she told me they always withdrawel it but this time they didn't, I was thinking maybe it was emty! Not sure though. Her alarm wasn't going off. The paper she has from the doctors appt last Friday says the alarm would have gone off on the 26th of Sept. so she had it filled 3 days before that. I just think they made a huge mistake in not taking her at 3 months and waiting 6 months. She's scheduled for Dec already. I don't think they tested for Meningitis but I am going to ask them about it. Thanks so much for everything you have offered.

Last edited by icream; 10-02-2011 at 07:16 AM.

 
Old 11-25-2011, 06:17 PM   #7
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Smile Re: intrathecal pump w/ dilaudid...need help asap!!

Sorry to hear your dr's office let u go 6 months without a refill. It does sound like a scheduling error. I've had my pump with dilaudid for 9 years and at first I had to travel to California to my original dr although I'd moved to Texas. After first few visits I went more than 3 months can't remember how long exactly but the dr told me he had been notified to never let more than three months go between refills I now have a dr in Dallas and still only go three months. So if they ever try scheduling longer u can always call a local medtronic rep and they will help you they have all been very good to me all over the country. I also experienced having to get increase after increase and it still left me in pain fortunately it was only about six months before time to replace the pump at which time the dr found the cath was kinked and all the med was going into the tissue when he changed it my dose was less than half from where we had increased to. So trust your body and listen to your symptoms because you know you better than any hospital. Not to mention they treat us like we are junkies because we have a pain pump. Good luck hope this helps.

 
Old 11-25-2011, 06:34 PM   #8
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Re: intrathecal pump w/ dilaudid...need help asap!!

Sorry ice-cream forgot to tell you in last that it's partially tru that it takes 2-3 days to help you should initially notice relief in low back close to cath by day three should notice relief in neck and other limbs not sure where all your pain is. I'm very surprised you didn't have withdrawal symptoms if your pump was empty and they should Always remove old med prior to refilling. With my first pump I heard it alarm once so I know what it sounds like but there has been twice that this pump I have now showed it was alarming but I havent ever heard it. I also remember my Forster telling me it should be refilled with at least three days left in reservoir as for some reason it's not as effective when lower than that and I've found that the couple of times I had to wait to travel to dr. And it was using reservoir my pain increased and it took a few days after refill to get improvement.

 
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