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dani477 11-30-2014 02:25 PM

tired of feeling bad.
I am divorced, raised 3 children, and currently live by myself. In 2010 I had an Intrathecal Pain Pump implanted for. Chronic Pancreatitis and constant back pain, which includes spinal stenosis, scar tissue, and narrowing of disc space. Shortly after the pump was implanted I experienced numbness in right foot, then both feet, and both legs became real hard and tight. I started retaining fluids in legs from knees to ankles, my abdomen and face became swollen.
This Dr said the pump wouldn't be causing these symptoms so I have had heart tests done and nerve tests done and all came back okay.
Has anyone had this pump implanted and gave them any problems? Several months ago this Dr finally agreed that it could be the pump cause he has had other patients with similar problems. I don't understand why this Dr didn't tell me this sooner! He has been cutting back the dose in the pump over several months now and am s heduled to have it removed 01/29.
I am taking 30mg of Oxycontin and 10mg. Of Vicodin for breakthru pain and still am miserable. This Dr won't increase the mg on my pain mess and I don't know what to do! I can barely walk and both feet are numb! I asked the Dr if my body could be rejecting this pump and he says no and he said he thinks the meds in the pump was causing my symptoms, but if that is true then why isn't my symptoms improving being the does of meds have been decreased dramatically? I am at my wits end and would appreciate any feedback from someone. Also, because of my abdomen being so swollen it is causing me to be so short of breath . also, is there any pain pills stronger than Oxycontin and that will give longer relief?

Shoreline 12-02-2014 11:08 AM

Re: tired of feeling bad.
That really is a low dose of meds coming off a pump. Pump meds are generally considered to be 100 to 300 times more potent than oral meds when delivered to the intrathecal space. I have had good luck with my pump but back in the oral days OxyC simply didn't last 12 hours if that is your present dosing schedule. Kadian, Long acting morphine does last 12 hours and Avinza "long acting morphine" is claimed o last up to 24 hours. I also tried Opana "long acting oxymorphone" prior to the pump and it seemed to last longer than Oxy and is stronger MG:MG than oxycodone. Their is also a long acting version of dilaudid but I have never been impressed with oral dilaudid, It just has a poor rate of absorption and doesn't cross the blood brain barrier well when taken orally where IV and intrathecal dilaudid is very effective. You also have the option of Patches, either Duragesic or Butrans, But Butrans requires you to stop all opiates before starting if I am not mistaken. Yes, their are stronger and longer acting meds out their than OxyC. Personally I think its criminal that Purdue has managed to Block all competitors who attempt to bring LA oxycodone products to the market. It just shows the power lobbyist bring to Washington. I once read their are more pharma lobbyist than alcohol, gun and tobacco combined.

Good luck and hopefully your doc will be more aggressive once your pump is off and out entirely, I also hope that resolves the fluid retention issue.
Take care, Dave

karlee1010 12-03-2014 09:44 PM

Re: tired of feeling bad.
Hi there. Welcome to Healthboards. I just wanted to add something to your already wonderful response above. This just helped me immensely today, and in the past, with my Pain Management appts., as far as communicating well with my Dr. Right before I see my Dr. (usually earlier the same day as appts.) I write my Dr. a short letter, listing my current main issues. I write it just as if I were going to mail it. I do this because I'd noticed that no matter how well prepared I was, or how great my intentions were, something ALWAYS came up to sidetrack me from discussing everything I was prepared too. Every single time I'd want to kick myself, hours after each appt. Simple. The Dr. asks a quick question and my mind instantly switches to that. So today, I went into the room, sat down, held my "letter/note", and then as I'm saying hello as my Dr. walks into the room, I hand her that note saying that I wrote down some very important issues just to be sure that I didn't leave out anything this time. I kind of feel silly at first, but right now I am SO grateful that I took the time to do this today. My Dr. answered all of my questions, said it's not a problem at all to keep me at this same dose of medicine another month because of my withdrawal smyptoms. She told me what the goal of all this lowering of my Fentanyl patch each month is for, and when we would know when it's at a safe place to stop for awhile. And then, she even commended me on these notes that I write her for much better communication between the two of us. Now, all of this didn't take much time at all, and that's why it didn't make sense not to just talk to her about it all. The thing is, in this very busy place, every other time, something would happen to disrupt us, and then she'd come right back in already talking and asking about something else. She'd still be talking as we walked out and around to pick up the prescriptions, and I'd say the thank you's and goodbyes. Once again, hours later, kicking myself for forgetting to ask something very important and simple. When I just read your post above, I noticed frustration on your part that I truly can relate too with my own Dr. Now, I don't know if you feel the same way with what I just shared, but, I wanted to share it with you just in case it could benefit you. With me, it's not usually the big things that I'd forget to bring up, but alot of little things that have really added up to make a big difference. The relief I feel right now just tells me that I am "heard" by my Dr. in this way much much better than before. (She'd usually be reading or typing as she listened to me and asked her questions). I hope you enjoy some benefits from this, just like I did today.

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