Dilaudid Pain Pump (Page 4)

I would like to talk to anyone who has a pain pump with Dilaudid. My mother has a pain pump and I am worried she will be on it for the rest of her life. She has had the pump for many years and I feel it has affected her greatly. She had to have all her teeth pulled because they were rotting and she also has a problem with her tongue burning and red all the time. I am worried she will never get off the pain pump because she is addicted... she also falls asleep all the time even while you are talking to her. Thanks for any advice.
Teresa.

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I have the same pump. I too lost all of my teeth. I am currently in the process of having them decrease my doses to slowly wean me so I can have the pump removed. I have had too many problems in the past 3 years and it hurts so bad where it is in my abdomen. Not to mention the side effects from the meds. I have severe inflammation around the pump and it feels as if there are knots forming. Now I find out that once it is removed they leave the catheter in the spine. I was not told this on the beginning so I am not happy. My pump contains dilaudid and bivipuvine. I have had many issues from the first day so I am having it removed. I now have no teeth and feel worse than before.

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I have had the pain pump for 16 years stardet out with morphine now on dulidue continius flow i had spinei cord toumor at t7 to t 13 i was in more pain id like to forget i had 2shoulder replacement knee replacement along with 11more operation make a long story short pain pump is a blessing u dont getthat from pill so let her get it done it will help her also addiction is when you abuse pills the got to have is different also i have real white teeth and ikidneys hurt like the insides liver kidneys ect. Its better than pills someone can take or break in your home ti steal. Pray see how it goes

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It can take many trails i was lucky only two trails but when they installed the pump they started me at half the rate which worked well and then will only up the rate 15% every two weeks until they get the correct amount for your pain level but be sure to remember pain is your friend it lets you know when something is wrong so be sure to keep a little pain just incase you will be able to know if you have further difficulties. Good Luck and God Bless

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I just received a pain pump on 8/5/17 for chronic pancreatitis. It works great so far.

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Re: CJK (# 12)

The Pump has given me a much better quality of life than the oral(and Fentinyl patches) that I had to use for 7 years prior to pump being put in. It does not however come without it's own side effects, getting it regulated can be tricky. Also I have now developed severe bouts of edema in my legs. But in all things considered the pump has been my slvation! Best wishes

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Re: CJK (# 12)

I have had my pain pump with Dilaudid and Bropivicain for two years now. It affects you completely different from oral pain meds. I NEVER feel high or drowsy.I have my pump for chronic pain. I thank God everyday that I found this Dr. I was on just about every opioid for the last 15-20 years, those drugs affected me greatly. I would never drive on them. NOW I feel normal with just small pain, when I don't need to have surgery that's another story. It don't really help with surgical pain. Good luck

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Re: nora (# 5)

I've been on my pain pump for 10 months and I have been miserable I feel like I'm in menopause. wake up feeling terrible sweaty hot burning in the face my ears are burning weight gain tired confused. and I don't know what to do I need help.

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Re: 2 much pain (# 19)

My husband got his Medtronic pump in June. It has been the miracle we gave been praying for over the past 7 years. His dose is finally stable and hasn't had to rrefill for a little over 2 months since he opted for the 40 ml size. I thank God everyday for bringing the new pain management dr into the practice who ultimately referred us to the new pain doctor who did the surgery and maintains his pump. God is good.

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Re: Sully (# 66)

So was my husband for the past 7 years after a bowel obstruction.

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Interesting about the tongue. U get laryngal spasm gasp and can't talk. I want it out, but Dr hostile tells me nothing. Do I go to the hospital administrator? Help!

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I have been in severe back, leg, foot, arm and hand pain for 10 years. Had multiple surgeries which did not help, in fact Dr's said no more surgeries. Oxycodone is the only drug that works but to any degree. The only way to reduce pain is to lay down. As soon as I get up the pain is on. I have a spinal cord stimulator that helps about 20 % and can actually make the pain worse. Two years ago I asked about a pain pump implant, 4 Dr's said absolutely not as these are only for terminal patients. I was also told the medication will degrade the bone structure over time. Now with the opioid issues the Dr's want to implant the pump stating this will work without any other issues. So what's the real story? There are not enough up to date studies available. I have real doubts that all of a sudden the pump is the best thing since sliced bread. Any comments out there? Also, is anyone using medical marijuana for pain control? Thank you.

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I have been a dilauda pain pump patient for 17 years now.It’s has not effected me.The pain pump has giving me a better quality of life.Its the way a good pain doctor that gives his patience the correct amount slowly and he always has me to have a spray of narcan just in case of any reaction.Anyone on narcotic pain control needs to have a shot or a spray of narcan just for safety to counter the effects of any narcotic therapy.And my Dr.Robert Hien has been the best of any pain pump control doctor I have ever had.He very careful on controlling narcotic pain pump solely on durations and on a bolus.Other Medication could have reaction that your mother has.Always talk to your pain doctor on other medication.I hope this may help you understand a better quality of life.My blessings are with your mother!

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I have had my pain pump with Dilaudid and Marcain. Ive gone up on the dose slightly due to tolerance over the last 12 years of having it. Initially the pain doctor put morphine in the pump but that caused too many side effects. I too was on Fentanyl 75mcg before the pump. The implantable TENS unit made my Chronic nerve pain much worse. Once i got the meds (dilaudid and marcaine) tweaked it was and still is a gift from God. I couldnt live with the pain yet couldn't function with the side effects of oral/patches/IV opioid. The pump has allowed me to function as a normal human and i never had a problem with the pump itself or the Dilaudid. Maybe the pain dr. Has other meds in the mix? A pain mgmt physician that specializes in such devices needs to evaluate your mother and perhaps find out if she's having a reaction to one of the meds typically used in pumps. Also, even if she and her physician decided it would be best to remove her pump, the physician has to decrease the meds in the pump very slowly to avoid life threatening withdrawal syndrome, not to mention the in-retractable pain she would end up in if suddenly discontinued from dilaudid. Perhaps find another pain mgmt physician that specializes in pain pumps for 2nd opinion to get all facts and options. There's a lot more involved than simply removing a pain pump.

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After reviewing the replies to my November post in regard to pain pumps and associated complications, some never experience these issues, but since there has been a big push to implant these devices because of opioid overuse I want to see what changes are made over a two year period before jumping on the band wagon. Yes I am in excruciating pain with severe mobility issues and am taking opioids, muscle relaxers and the usual pain control methods; however, long term I don't want to make the issues worse by having the pain pump and meds cause other potential problems. Also there appears to be inconsistencies between doctors as to the meds used, dosing and even the fact there may not be a doctor within reasonable proximity to fill and maintain the device. I will continue to monitor this site and comments as they have been really helpful.

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