Friday, July 25, 2014

Thursday, February 18, 2010 focus0725, Community Member, asks

Q: Medtronic pain pump medication side effects?

I have a Medtronic pain pump in with Dilaudid. Any side effects from anyone else with the medications?  I would like to hear, as I am having side effects and need to find out if they are pump related or not.  Thank you!

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Answers (23)
simpliewen, Community Member
2/19/10 9:15am

I would love to talk to you. I have had a pump for almost a year now. I have tried Morphine and am on Dilaudid. I have given Dilaudid a good try and am going to change it to Fentinyl (sp?). I have been so sedated on dilaudid. I have fallen asleep with iced coffee in my lap. I was getting ready to go drive to my mother's house and fell asleep for two hour on the couch while putting my shoes on. Also, we have not been able to get it high enough to help the pain. I have fibromyalgia along with other problems. This pump is my last hope. I would love to hear your story or anyone elses. How long have you had your Pump? Is dilaudid the first med. you have tried?

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focus0725, Community Member
2/19/10 10:56pm

Hello!  Thank you for responding.  I really appreciate the feedback.  I have had my pump now for approximately 2 years.  I have had Gabipentin, Morphine, and now dilaudid.  It is really nice to find someone here that is kind of going through the same thing.  I have it for chronic back pain.  I would love to talk more to you about this.  I do not have the sleeping side effects, but then mine is placed in the T-10 intrathecal area.  Where is your pump at?  Any other side effects you have suffered with this?  I do get great pain relief, but I have had other side effects from this that I am concerned about.  My physician that regulates the pump has, in the past, denied that the problems I am having are pump related.  I have had a considerable amount of weight loss, and now I am dealing with nausea.  Have you had any of these side effects?  I would love to talk more about this and would appreciate another email from you if possible.  Thank you!

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Jeff, Community Member
10/24/10 6:45pm

I have had my pump for 6+ years and i also have dalaudid 30mg per cc. You need to find out how much concentrate the dr is giving you. I also had a loss in weight. The reason for this the meds slow down your metabolism and heart rate that your body is almost in hibernation. I went from 202 to 160. I've tried to eat more but your body doesn't need the extra lbs because your heart rate is low it doesn't need the > I can go without eating anything for acouple of days without getting hungery. Get your heart rate checked with a monitor to get an accurit reading.

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Desperate Dawn, Community Member
2/26/14 5:17am

I dont know how to use this site. Not really good with puters. But suppose get the equiptment yall have. Do you regret it. They give u these great booklets n dvd. But I am scard but so tired of the pain. And they said my bone marrow test say I cant have the rods put in my back that the originalky thought. I have had 5 back surgeries n two kneck. Truelly hope I can find this spot to read answers again. Scard confused but tired of living everyday in major pain.I am gonna try to join community n hope thats how I find you guys again.. one scard person. Dawn

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Jeff, Community Member
1/ 4/11 8:41pm

Hello Your weight loss is due to the medicine and not the pump it's self. The opiates slow down your body's metabolism and that will cause your body to compensate for food. I've had my pump for 8 years . My heart rate is allways around 45 or less, bp is ok. In 8 years the medicine did something to my sinuses so I couldn't sneeze if I wanted to.The pump doesn't cause the side affects it's the medicine.

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maggie, Community Member
6/ 8/12 4:56pm

I gained 15 pounds! I always feel bloated since I have the pump.

maggie

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Chlyab, Community Member
3/15/14 12:11am

I have had my pump for a year now, this is my last resort as i have had four back surgeries in the last two years. I have tried nerve blocks, epidurals, physical therapy and anything else you could possibly think of. I am fairly young and weighed about 95-105 pounds, since i got my pump, i gained about 30-35 pounds which makes it even worse on my back. I do my normal things, nothing has changed in my diet, if anything i eat less. I glad to see that i am not the only one suffering from weight gain from the pump. I was initally on morphine in the hospital with the trial. I ended up having terrible reactions to the morphine including not being able to urniate. Worst feeling ever. I go to the neurologist every month to have it upped as i haven't reached a comfortable level yet. If anyone has any advice of exercises, light stretching or coping with the pain, please feel free to help! Thanks!

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MAGGIE, Community Member
3/20/14 8:23pm

I had to give up on the pump. I had 4 revisions and each time I rejected the catheter.

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maggie, Community Member
6/ 8/12 4:58pm

I think most people know it is the meds, not the pump.

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mr goodrench, Community Member
7/28/12 12:54am

Hi,

I had the Medtonic Pump for over ten years. It is not the total answer to all our problems, however, after twenty-five years fof pain in my biliary duct. (similar to an acute gall bladder attack)

This was the answer, after going throough a "hobby horse" of Doctors who had the answers. Right.

When the pump was put in the first month I had the tubing break at the spinal cat. Then I spent the next year going through every drug from baclofen, dilaudid, then morphine. All was well, even after four pump replacements. Then in 2009, I received a letter from Darhmouth- Hitchcock Hospital (two pages) telling me that there was an interaction with the three drugs I had used.It would cause "granulomous." I was slowly being paralyzed by the drug for the past eight or so years. (loss of walking and balancing, and ohter side effects.) The pain clinic did not review the MRI's that I had done every year for three-years, that is, until I sent them the letter. I was told to see a spinal surgeon the next day for consultation. His answer was that he knew about this for nine-years. I was sceduled for surgery the next day and came out of the hospital to a nursing homefor five months. Now as a paraplegic. No one would talk about this, nor had the information. Why didn't anyone apart from the surgeon know? By then it is too late. beside this I had the pump changed again after the surgery, and developed MRSA from the surgery. I told the surgeon, while on the table to remove the pump, I am sick and tired of all this plus being rendered paralyzed. I resorted to oral morphine and I have have had little to no pain in the past three years. However, the pain and suffering I have is now due to the being a paraplegic, with all the many other side effects.

That's my short version of my journey with the Pump. If I had the same pain again I would think twice and search out interactions.

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Mandysmom11, Community Member
12/20/12 3:18am

I have had a Medtronics nerve stimulator in my low back since 2006.  The stim was implanted in my lumbar spine, with wires going up to just below my cervical.  The stim does OK, but only works where the implant and wires are actually located.  My spine was damaged in an accident in 1997, and I have since had 2 fusions in my cervical, and 4 fusions in my lumbar.  I also have 2 more bulges in my cervical, and 2 in my lumbar.  My prognosis is that I have either a bulge, herniation, or bone spur at each disc throughout the rest of my spine. I also have a high level of spinal stynosis... and am a Type II diabetic.  I am currently being considered for a morphine pain pump for my pain... I have had severe side effects the two times I was given morphine after surgeries.  So during the trial stage for the pump, my doctor has advised me that dialudid would his drug of choice if I choose to try the pump.  I currently take Percocet pills for pain, and I feel fortunate this far, that even with all the pain, I am still  able to walk, and have a half-way decent life.  You mentioned that you became paralyzed... is that from the pump and meds you were using over the years, or something you already had to deal with?  I've also been thinking what dangers might come along with having a pump...  if I'm ever in a car accident, etc., could that cause the pump to rupture inside me?  I have some major concerns about the pump, regardless what kind of medication is in it.  Please let me hear back from you soon, as my trial date is scheduled to begin on December 31st, just 11 days away.  I've been researching the questions I have here for you, along with talking to people who have or had the pump... I've gotten mixed opinions ... some are very happy with it, but so many others had been just the opposite.  Mandysmom11@hotmail.com.  Thank you, and God Bless!

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Pita53, Community Member
8/10/12 5:50pm

I am using the Scopalamine patch for N/V. Works well!!!

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deerhunter1, Community Member
1/28/13 2:10pm

Hi , I had my pump installed 12-13-2012, I have fentanaly in it,my pain is greatly reduced since L1 throught L5 are bolted together. My problem is I am sick to my stomach all the time. The pain doctor says its not related but Idid not have this problem before. Any help would be appreciated. Thanks

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tina, Community Member
3/24/14 6:37am

Hello. ...

Wow same thing

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Maire Kaye, Community Member
3/30/10 1:44pm

Hi,

I just had my pump put in three weeks ago for Lupus destruction of my spine.  I like you can NOT stay awake!  I am excited to see this post!!  I was doing ok with it at .80 Morphine, when they increased it to 1mg bam, that did it, I've been sleeping 24/7, and that is a small increase.  Right now I am awake to eat some chicken soup, then I'll go back to sleep.

So this sleeping happens to you no matter what the drug?  That is not encouragaing....I also have a stimulator, but it abruptly stop having the great effect it had been having.

So what is next for you?  I am afraid to tell the doc, he may turn it so low it won't work....

Thanks,

Maire

 

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Wendi, Community Member
3/31/10 1:40pm

Marie,

I know how you feel and it would be great if we could get more input from others.

The pump was my last choice and I thought it was going to give me my life back. No one told me it could take over a year. It has been over a year now. I started with Morphine and my feet swelled twice their sides. I didn't feel right on it and it didn't help the pain. I also gained 10 pounds. I talked them into Dilaudid. I thought the dilaudid was going to help. I thought I felt some relief we kept uping it and suddenly I started falling asleep. I dropped coffee in my lap and fell asleep putting my shoes on before going to visit my mother. She called 2 hours wanting to know where I was. I fell asleep. We switched to fentanyl 3 weeks ago. The dosage is too low to tell, but as least I am not falling asleep. I may have her add a small amount of Dilaudid in it. This is frustrating, but hang in there. It takes a while. Don't give up

Let me know how it goes. I have an appt. every week to increase the fentanyl.

Wendi

 

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Earl W. Rice, Community Member
3/30/11 12:32pm

hello , my name is Earl, i am from south ga, i have had my pump in now for going on 3 yrs, i am on morphine 1,8 mg. i must say before the pump i couldnt walk without fallen, the pain was just to much, but now i am up and running, i do so much more now, i thank GOD everyday for the pump, i still can not lay on my stomuch at all, and noway can i lay on my side where the pump is, but thats ok, you learn to live with what you got, well i will keep up the prayers for all of you. who has this problem, ttyl

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scottharoldsen, Community Member
2/15/14 6:00pm

My wife has had horrible back pain for about 8years.  She had the Medtronic pain pump put in three weeks ago.  She sleeps about 20 hrs per day.  She feels sick like the flu all the time.  She has hot and cold flashes most of the time.  Her pain is gone but she wants to have the pump removed because she went from having very poor quality of life to no life at all.  No food ever sounds good and when she isn't sleeping she just lays and moans in the fetal position. The doctors says the side effects are not related.?!

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ev, Community Member
6/24/14 1:20pm

I am about to have the pump implanted in September. I have gone through all of the things before such as injections, traction, physical therapy, meds and currently have a spinal cord stimulator implanted (that I will have taken out). I have had 6 back surgeries and still have pain constantly. I did the trial for using dilaudid in the pump and it worked excellent. I had no dizziness, nausea, feeling drugged or anything else, I just got pain relief. Of course the spinal cord stimulator worked great during the trial as well but the permenant one doesn't work at all. I am hoping this pump works, I still work 12 hour days as a supervisor in a manufacturing plant and walk all day on concrete floors but due to this pain I have only been able to work 6 months out of the last 18 months. This pump is really my last chance before having to face the facts of possibly being considered disabled. I know that forums usually only have people that have had negative results because if it works well you don't go to forums looking for answers, but is there anyone here that has had a really good outcome from the pump?

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Gojo, Community Member
5/18/10 5:48am

If you are falling asleep you need to tell your doctor so he can turn the pump down some. I know that means more pain for you bit you have reached what is called your ceiling and if your doctor keeps turning up your pump it can result in being fatal. I'm not trying to scare you but you do need to know this and your doctor should know it.

I had morphine in my pump for 5 years until I became allergic to it. I wasn't getting too sleepy with the morphine but it decided that it didn't like me. I was then given diludid and it worked but made me sleepy. Now my doctor has dilaudid and fentanyl in my pump at the same time and so far they work great together but I recently started to have anxiety attacks. I'm not certain if it is related to the fentanyl or the testosterone that I was given because the fentanyl and testosterone were started at the same time.

 

I quit taking the testosterone but now I can't sleep 3 days after I quit taking it and I fear that it is from the fentanyl but I'm not sure. I know someone else that I talked to today that have the same medications in their pump as I do and he is still taking testosterone and they aren't having any problems with their pain pump meds or hormones. My pain is much much better but now I ask myself at what costs? I can't sleep and I have ended up in the hospitsl ER twice in two weeks. I go see the doctor next week and I will have to explain to him all of these side effects that I'm having but until then I'm kind of scared. My histamine levels are high as well so I took some Wal-Zyr (oss brand Zyrtec) because I'm having trouble breathing through my nose. As soon as I figure all of this out and get it straightened out then I will let you guys know the outcome.

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kgirl40, Community Member
9/12/12 5:56pm

I really feel for you, I have been where you are. I drove myself because I had two smaller children at the time I had mine.Ino longer have the pump due to the fact it was rottening inside my body all around the pump and had to be renoved, but before it did, while driving down the interstate with my daughter and I woke up headed into the side of a car, with my daughter crying and screaming,"momma wake up". After that I had to stop driving until it starting rottening tissue around it and had to be removed, now I have a big hole in my stomach ffrom where pump was and I was on dilaudidas well. Take care and hope this helps

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Gojo, Community Member
5/10/10 9:10pm

I have had a pain pump since 2003 and up until 6 months ago I had morphine in my pump but do to a allergic reaction I have had to switch to dillaudid. Recently I switched doctors as well and this new guy is something else. He has added fentanyl to my pump with the dillaudid. He said the fentanyl binds to the spine stopping pain signals and the dillaudid is used as a floater that stops anything that the fentanyl does not stop. Being as I just had the fentanyl added two weeks ago and I still need to have the pump turned up I can't say that it is the best thing ever. However, I can say that I have noticed an decrease in pain just since the fentanyl was added. I hope in the future when the pump gets turned up that it will stop my pain more than the morphione ever did. 

 

Just a word of warning to men that have the pain pump, get your testosetrone levels checked. After years of having the pain pump and 3 doctors later did I find out that my testosterone level was a mere 35 and that normal levels are anywhere from 300 to 1200. I tell you this because it is true and it can lead to serious health issuses.

 

If you need a new pain doctor or you want your doctor to talk to my pain doctor who is a leader in his field than you or your doctor can contact Dr. Craig B. Danshaw DO, at Healthsouth City View Rehabilitation Hospital, a branch of Harris hospital in Fort Worth, Texas.

 

Healthsouth

6701 Oakmont Boulevard

Ft.Worth, TX. 76132

 

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DaveT, Community Member
12/ 1/10 11:41am

Thanks for this information. I live in Arlington and see a doctor in Dallas. After problems with morphine they switched to dilaudid in my pump. They can't get it high enough to relieve the pain without causing me to itch. I have been using a lower amount through the pump and fentanyl patches on a part time basis and the relief is pretty good. Actually I'm thinking about staying on the patches because I use them "part time" while the pain is obviously worse at times I feel that this keep my body from becoming tolerant and needing more opiates. I have a friend that has a pump. The dilaudid works good for him...but he's gone from getting relief at 1.0 mg a day with no break through meds to 1.3 mg a day and a stronger break through med in a matter of 8 months. I also went through the testosterone thing.

 The opiates have the oposite effect on me. When we tried just fentanyl in the pump it shot my heart rate up to 130 bpm. It effects me like speed. I can't sleep...no appetite. Anyway...I've gone without the fentanyl patches for 4 months now in an effort to get to just the pump for pain relief. I am concerned about the dose having to be increased more and more. Do you think it might be better to just use the fentanyl part time like I am?? I'm getting mine filled today with just dilaudid...if you would please keep me posted if you have to start raising your dose on any kind of regular basis.

 Does anyone else have the problem of opiates effecting them like speed??

 

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Robbi, Community Member
12/ 1/10 4:33pm

Hi, I won't be getting my pain pump until Feb. I missed my appointment and it set everything back.  I am on Dilaudid every 4 hrs. 8mg, 400mg ibupofen whenever, both oral. All opiates effect me like speed.  In the evenings, I am zooming around cooking 30 cupcakes, cleaning house and etc.  But the next day I am beat, I can hardly get up.  I take restoril for sleep.  I use to use the Fentanyl patch 100mg every 3 days.  The side effects were nausea in am, and itching.  All opiates make me feel that way.  It sounds like the pump is just as bad.  Maybe I won't get the pump.  I am not sure what to do. I want to increase the Dilaudid but the constipation is so bad, I am afraid.  I really need to go up to 10mg dilaudid every 4 hrs .  What do you think?? Thanks, Robbi 

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Bonnie, Community Member
2/ 7/12 7:05am

Hi Robbi,

What other pain meds have you tried? It doesn't sound like you have given oral pain meds a good chance. Ibuprofen is like asprin. I am on hydromorphine 8mg 8 times a day, methadone 10mg 8 times a day, soma 325mg three times a day and a 50 mg fentenyl patch and I am doing pretty well with my pain from a spinal cord injury (incomplete) and some back problems. Also, I had a 4 level neck surgery done in Germany to relieve the smashing of my spinal cord. The spinal cord tells me I have pain whether I do or not. I have nerve pain in both hands with some loss of feeling.

As for the itching, scratch it, at least it feels good. For the consipation, I take 5 docusates a day and increase my fiber and water. Most pain doc will have you on multiple pain modalities. Also, I have found trigger point therapy very helpful.The pump is a last ditch effort for pain control and I would try anything including changing pain docs to not have to have a pump implanted in my body. It is good to know they are availble for me someday just not yet.Please consider taking more pain meds before you get the pump. I've been in this pain med thing since 2006.

Bonnie

 

 

 

 

 

 

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robin zocco, Community Member
2/28/11 11:41pm

Sealedi have a medtronic pain pump for 1 year and have had lots of problems the doctor that installed it currently has nothing to do with pain pumps and i moved to ada oklahoma and was trying to get into a pain center in tulsa but due to medicad not covering the meds they will not take me on as a patient meanwhile my meds are finishing and need help ive been trying everything to get help i have terminal cancer and cannot go threw withdraw again last june my pump went dry during a kidney removal and i was deathly sick so after 6 weeks in the icu 3 and they filled it and still ended up in the hospital 2 more weeks . i dont even know what to due the dr said i would die if i remove it or go into withdraw  please if anyone knows what i can do please help  rzocco@cox.net

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Elicia, Community Member
12/15/13 1:36am

See if Dr. Munneke on Memorial Rd. & Santa Fe in OKC would be covered for you. He prescribes all my meds. It is a drive, but once every 3 months.  There's also Dr. Jeffrey Meyer in Del City on 29th Street that does the Medtronic Trials and referrals.

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jpg, Community Member
6/25/12 4:47pm

I have had a pump for 8 months, my general Dr. is the one that caught the low level. He runs blood test on me every 6 months due to all the meds I'm on with the pump.

 

I hope you have good insurance, it is costly

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Scotty808, Community Member
9/17/12 9:57pm

   Ihave had the Medronics pain pump for approx. 7 months,Besides the catheder pulling out at my spine twice, it now works well, but the very small incraments its being brought up with are aggrivating, I have Dilaudid with Baclofen, and I too have very low testosterone level, 26.7 I was shocked the problems that could cause, so today I am androgel 1.62 to start getting back to normal.

   The thing I want to knowthe most, that seems to be hedged around, is what is an average level of the dilaudid once its at a upper range? I am at 2.0 now compared to what? is my question, I understand all people are different, but the must be an upper and lower range...aloha........Scotty

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Networker321, Community Member
7/ 5/13 3:48pm

Scotty,

I don't even know if anyone reads this thread anymore, most of the posts are from 2010 and yours is the most recent. I had my pump installed at Vanderbilt Hospital in Nashville 9/11/2012, same day as Benghazi.

Not a single problem except lowering of testosterone so I have Androgel 1.62% and it's coming back quickly. I am on 1mg of dilaudid and 4mg of Bivipucaine (Anesthetic, numbing agent). Due for refill next Tuesday and they order it 2 days earlier so I mailed my pain doc that my body had become acclimated to this dosage as I was reaching for the Medtronic remote twice a day and now it's almost three times a day. I had a Whipple procedure for pancreatic cancer April 27, 2004 so now my onc doc says I have less chance of having a recurrence than someone who never had it. I was on 1200MG of MS-Contin, (6) 10mg Lortab 10's for "break through" and a 100 MCH Fentanyl patch. Onc doc said that dosage would eventually hurt my kidneys, liver, heart and brain. He also admitted on my last monthly appointment that The Whipple Procedure is absolutely the worst surgery you can have. They cut through every nerve they come to. Also, 10" of duodenum removed and gall bladder. They cut off 1/3 of my pancreas of the head, then slit my stomach and put the remainder in there to aid in getting the most insulin possible. Cut the Vagus nerve which tells you when you are hungry, I never am. Unless I am careful I will lose 10 lbs. a month. At 6'5" I am at 204-207 and that's fine. I am slim and my shoulders are bony. I used to hit the heavy weights at the gym every morning before work and I weighed 265. Got down to 168 after the surgery, looked like a walking skeleton. 

So, I dumped my history on you but can't definitively answer your question. Can't answer your question but I have seen people in here taking huge amounts of oral Dilaudid daily and, my onc doc says everyone is different. If you see this let me know how you are doing.

Thanks,

Rick

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Jenniferandike, Community Member
10/11/13 7:57pm
I am not sure how old any of these posts are. I just got my pump in may and I have had all sorts of bad problems. I got the pump because I have had over 108 surgeries. I lost the muscles in my leg 6 years ago. The chronic pain and the acute pain has been horrendous. My issue is swelling and anything can make me swell until I have to have surgery. I wanted the pump to get off of opiod medications all together. I tried something calld prialt but it made me so sick. My blood pressure was 69/50. Now I am on dilaudid. I have gained 20 lbs in 4 months. I had to have two blood patches and another surgery to stop spinal fluid leakage. I'm trying to find out what an averag dose is for dilaudid in the pump. Right now I am at .6354 day. I can give myself a bolus dose every 4 hours but it doesn't seem to help. I am also dealing with lower back pain , sweating, ringing in the ears and runny nose. Does anyone else have this. Reply
Beth H., Community Member
10/31/13 3:18pm

my goodness. you have been through so much. i have had a small resembulence of your situation. i now have a pain pump with dilaudid. my dose is a bit higher then yours, but i was told by the nurse who is the dr.'s office is the pain pump expert, that my dose is extremely low. i just was able to give myself a bolus dose. again, very low dose. the dilaudid is not affecting me the same as you. im not sleepy. i dont notice it helping my pain. i still have pain and i get the sweats, but thats about it. 

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Scotty808, Community Member
3/10/14 9:28pm

  Hi all again, well it has turned out the Didlaudid, worked somewhat because I never went into withdrawls, but it never really helped my pain like I thought it would. So finnaly it has been changed to Morphine,its started at 6.504 a day, along with baclofen and also Bupivacaine..Now from what I understand I am starting morphine at a low dose again as I did with dilaudid...does anyone know about doses, or what a standard does is and or if my dose is very small mid range or large, I just do not know...

   I also had to go on Testosterone 1.62 gel, but lately they have been showing those damn commercials on TV about testosterone giving you Cancer and other problems, so much is wrong with our medications now who knows whats good or bad..

  If anyone has some some answers I would appreciate it..Thanks much..Scotty

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C.D. Hughes, Community Member
5/18/10 9:33pm

Hi, my name is Carol and I have had the medtronic pain paump for two years. The first year I was on morphine with very little pain release. Very nausated. My doctor switched me over to FENTANYL. It did help with the pain better than the morphine but I have been so severely nausated.  In the last 3 months I have had increasing problems being sick to my stomach. Go to bed sick, wake up so nausated. You do know that FENTANYL is 100 times stronger than morphine.

 

Today my doctor switched me over to DILAUDID. I cannot say what effects it will have on me. I pray I can just find some relief from my back and leg pain without being so sick. I'm a retired paramedic and was hurt on the job. I am fused from T-12 through S-1. I wish you luck with the FENTANLY. Meds work different on different people.  I was told today that only MORPHINE, FENTANLY and DILAUDID are the only three meds that can go into our pumps. You will be in my prays.

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FIBRO@13, Community Member
10/30/11 12:05pm

i've had my pump since july 29th of this year. it was filled w/ morphine since my neurosurgeon said that was the only med that helps with pain both above and below the insertion site. I wouldn't stand the withdrawals from taking 24mg of dilaudid every 4hrs. we stopped pump and started the pills again until this Oct.12 when they replaced ms with dilaudid; because of bp dropping they stopped giving meds for the withdrawals and stopped the 8mg dilaudid q4hrs....was in nicu for 12 days. seemed like forever.....he considered marcaine in the pump. my husband is a medic and has had pts with marcaine. all i can do when the pain gets so bad is focus 100% on healing scriptures from john hagee or christian music. since its hard to concentrate on reading my bible. i've had fibro for almost 29yrs and started opiates at age 13...very tired of having pain and the pump is my last hope! i wish you all luck and success.....GOD is surely teaching me patience and perservernce now. before God i felt worthless and didnt want to live anymore if i had to live in pain everyday.....now he has given me peace and hope...and strength for the day. even if i cant do anything I can give him praise and feel his presence and i am at peace even in unrelenting pain that keeps me up all night. there's a reason.....i want instant gratification but my hubby reminds me its a journey....praying each day gets better....thanking GOD every step and for putting me with a dr. that is a man of GOD! MY PRAYER FOR EACH OF U IS TO ACCEPT WHERE U R TODAY AND KNOW WHEN U DILINGENTLY SEEK GOD, HE WILL GIVE U THE DESIRES OF UR <3....I KNOW I WILL BE PAINFREE ONE DAY...............LUV U ALL CUZ WE KNOW WUT WE ARE ALL GOING THRU AND WE DONT HAVE TO GO THRU IT ALONE....WE HAVE EACH OTHER......

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Jeff, Community Member
10/24/10 6:55pm

I also have dilaudid 30mg per cc .I my case I found out that the meds cause your heart rate to drop fror 38 to 58 in my case. A slow heart rate will case you to fall asleep quick. I have had the same problem as you falling asleep just about any ware. I started taking caffine to keep me awake and I can say it has helper 80% better than with out taking caffine. I take 200 mg 2 or 3 times a day.

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Scotta, Community Member
10/27/10 10:11am

Fentinyl will make a huge differance. It changed my life. Just reading your

story gave me a flash back, That had been me all over.

 

Good luck with the Fentinyl.

 

Cheers, Scott

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Dan, Community Member
12/30/10 11:35pm

I have had my pump for over a year, and my medication has been a mixture of bupivicaine and Morphine! When it is turned up enough to get rid of most of my pain, I can not stay awake! I even take Nuvigil, an upper, and it hardly has any affect unless I drink a 5 hr drink with it, then it works good!  My largest side affect is swelling in the ankles, feet, and legs!  Right now, they are swollen twice the normal size!  Plus, I am on Demerol, which does not interact well with Morphine!  I just put in a call to my pain Dr., to see about a change in medications!

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jeffbracken99, Community Member
5/25/12 6:57am

Morphine has allways mad me sick. Ask your DR. If you can change your meds to daluadid and oxycodone? If shouldn't make you sick. Mant people get sick fron Morphine./and it affects your vision.

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Elicia, Community Member
12/15/13 1:53am

Is the above post (Dan) my Dad? If not, I need to tell him that another Dan is having the exact same reactions! I'm researching through here, deciding if I should have my Medtronic Stimulator fixed/redone where the wires pulled out, or have it removed?

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anna peace be with y, Community Member
2/28/11 9:07pm

peace be with you;i have had mine since 2004 ihave never felt the meds other right after it is filled,my is for fibromyalgia. i now have ar in my spine,i also belive that the pump has given me a bowel problem. ifound this net by ask.com so lets talk follow your self well know your self well before you change all those meds. at first i had morphine.my body would not take it .so diaudid is what i have.i also take perce.10mg.3x aday i'm still in pain so i take herbal baths,teas.read alot good things think great thoughts .live as peaceful as i can let no one change my goodness.give it so peacefulness inside of yourself first it takes more than a year to know how it works/i think i pray you wellness.anna peace be with you .

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Deborah L White, Community Member
6/25/11 7:36pm

I have had the Medtronic pain pump in me for about 3 years now I used to be on Morphine but I had terrible side effects from the Morphine so I was switched to Dilaudid and I went from 22mg to 28mg and for the past 2 weeks Im having a bad time with feeling sick to my stomach.I cannot even keep fluids down.Please I need some help what should I do?Im droppong weight like crazy also!

 

Thanks D.Whit

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DaveT, Community Member
6/26/11 1:11pm

28 mg...or 2.8?? Morphine made me sick. All the opiates make me lose my appetite and affect me more like speed. Lack of sleep, etc. I would let your doctor know. Morphine made me really sick like your describing. The morphine was the only thing that ever worked in mine. I wish I had an answer for you. I'm thinking about getting mine taken out and going back to traditional meds. You might try lowering the dilaudid and having them add Bupivacaine...it works for a lot of people.  They tried bupivacaine in mine which numbs the nerves so it takes less opiates. In me unfortunately it started burning the nerves. It put me in more pain than I've ever had.They ended up putting saline in my pump and putting me back on fentanyl pateches. I would like to know if anyone else got the burning from the

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focus0725, Community Member
9/ 1/11 5:39pm

Hello!  It was great getting your reply.  I would love to talk to someone about it also.  I have had the pump in for pain for degenerative disc disease for about 2 years now.  I started out as part of a research project with an experimental drug for the pump that ended up failing miserably.  Then, they changed me over to morphine, which caused many problems from itching to vomiting.  Finally, they did dilaudid in the pump.  That has, so far, done a pretty good job.  I can claim my pain down to 5 some days, but for the most part, it has been starting to go down hill lately for effectiveness.  I have to also recently changed the medical group I am going to for the "fills."  Hopefully, I will be able to get this taken care of.

 

Dilaudid is not working for you?  I would be interested in hearing how the Fentanyl is working.  I have not had any problems with the dilaudid now that I have been on it for a while.  I think the side effects go away after a while.  I have had to take anti-nausea meds for staying on dilaudid.   I did originally loose quite a bit of weight on the med, when I first started.  They thought I might have cancer, so I had to go through a bunch of tests for that also.   I would be interested in hearing more about how your pain is going on the new meds.  What happened that they are changing it to Fentanyl?  I think that will be my next move.  This is my last hope also.  They told me I could have surgery, but recently I have heard that that is not really an option for me, which really was a surprize, but I have been totally disabled at a young age for this, so I guess nothing will really surprize me too much anymore.  They had told me I could have a total spine fusion, but that is not really an option I guess. 

 

Please reply, I would love to hear about how you are coping and if the fentanyl works for you without too many side effects.  Good luck!

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DaveT, Community Member
10/14/11 10:29am

I have come to the realization that there is no such thing as long term, round the clock relief without continuing to increase meds. I'm also totally disabled with little hope of ever getting back to work. I've found that if I get 15 25mcgh patches and wear them for 12-14 hours a day every other day I get enough relief to get exercise and get out and about some every other day without increasing tolerance. The fentanyl affects my appetite and sleep so I put the patch on right before bed time and I can still sleep. It is working when I get up the next day. I wear it until about 10-11 AM and take it off. The relief usually carries me until about 4-5 PM. It's not round the clock rleif...but at least I do get relief some days. If I want to do something with my family I time the patches accordingly. Idealy I would have some 25 mcgh patches and some 50mcgh. With the 50 mcgh I can get my pain down to the 4-5 range...but as you know using them round the clock and within a month or two and they wouldn't be effective anymore. This is the best solution I have been able to come up with. It's not round the clock relief...but the bad days are easier to deal with when you know that there is relief the next day.

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Jane916, Community Member
12/ 3/11 4:27pm

I'm on the fence right now about whether or not to have the pump installed.  I have a couple of serious hesitations.  One is that the NP at my doctor's office tells me that I should have fewer side effects, i.e., drowsiness, etc. with the meds (they've only talked about morphine) through the pump than either the Fentenyl patches in combo with percoset than I have administering the meds thru the pump.  I'm not at all sure I buy this, but they tell me the meds start working before it hits my brain when it goes through the pump.  I have so many questions, one of the most important being that I can't imagine how essentially implanting something the size of a hockey puck can possibly be comfortable.  I thought dilaudid was very short acting which is why it's used in ERs more than the other choices.  I've been pondering all this for several months.  I'm on Medicare and I had to quit the Fentenyl patches when I reached the donut hole and the cost of the patches was $400/mo!  I shot myself in the foot because when I finally made up my mind to get the patches regardless of the price, I had to start over at 25mcl. patches. Because they were completely useless at that dosage, having stopped when I was on 100 mcl. every 72 hours, it will now double the copay until my body adjusts to the high dosage again.  The lower dose patches had about the effect of a baby aspirin.  Thanks for listening, and any suggestions are very welcome.

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Kcsr, Community Member
6/ 5/12 9:04pm

I've had an Intrathecal Pump with Dilaudid after trying Morphine since 2002 for

Failed Back Syndrome, They even mixed Baclofen with both Meds. which did not

work for me but Baclofen added with Morphine,Dilaudid might work for a different

patient. Every persons body reacts to Medications differently. Anyhow my pump

just has Dilaudid. But unfortunately I still have to take oral meds. A couple of yrs.

ago i had a Granuloma, which is a build up of Dilaudid & Calcium at the end of the

tube from the pump to the intrathecal Sac area where the Medicine is delivered

which had to be surgically fixed. I was told it was due to the rate of medicine flow

that was in 2008 i told my Dr.  I knew my body and i was having more pain than usual & my symptoms were worse. so he had a CT Scan done and told me i was

right that there was a granuloma! They can come back also.Unfortunately I'm

having the same sympyoms again & i have a feeling it could be another Granuloma. So in the long run if it is another Granuloma i'm considering having

the pump removed.Remember you are your own best advocate if you feel you are in pain, & your symptoms are bothering you more than usual be firm with

your Dr. and have him do more tests, He works for you and some times Technology does not always work the way the Dr. thinks it should. Different things work for different patients. PS. Be persistant!

and having different symptoms. Be strong and tell you're Dr.

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DaveT, Community Member
6/ 6/12 3:59pm

Sorry to hear about your problems. The granulomas can be very dangerous. I have read that if they catch them early they can run saline through the pump and disolve them. I'm not sure that is fact. You are right about the way you communicate to your doctor...and sometimes it's in your best interest to change doctors.

 I assume that when they make an increase in the amount of medicine coming through the pump there is a couple months that you don't have to use oral meds?? I just got dilaudid put back in mine. We are increasing the dilaudid and going with smaller fentanyl patches. If they are unable to give me enough control of the pump to lower it at times and raise it back up on my own I will probably stay with the 25 mcgh patch and use them sometimes and go without sometimes. It's the only way I have found to have good relief part time without increasing meds on a regular basis. Good Luck!!

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PainPumpFriend, Community Member
11/26/12 1:36pm
I have had the pump for 8 months. Always had Dilaudid. It has taken 8 months of tweaking the dosage to finally get it right. I now rarely use the PTA and am not having pain. Reply
tg, Community Member
6/28/13 5:32am

i just completed pain trials using dilauded today and will be moving on to stage two of the trials where the pump is to be operational but outside the body.  the information you hold is vital and hope oou wouls share them with me.  my email as follows   terry_greer23@hotmail.com   thank youi

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bonnice53, Community Member
7/ 1/13 9:31pm

The dilaudid made me very sick and very sedated. I felt almost comatose. I finally had it changed to fentanyl and clonidine. I have no ill effects, my pain is under control, and I am happy. Good luck.

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MReed, Community Member
12/ 7/13 9:10pm

I am on my 3rd pump.  The first one was in 7 years.  I had been telling the nurse for years that it felt to me that it was not working, they would just increase the level.  Finally I asked the dr if he would change it out because it has been in 7 years and I was getting afraid it was going to suddenly quit working.  When he got into the surgery he discovered the catheter had come out of my spine and was wrapped around the pump like a yoyo.  The morphine was dumping out into my body cavity and doing me no good at all.  I was sent to a physciatrist because they didn't believe I was still in so much pain.  I left his office in tears.  He said it was time I grew up and realized what I had put my family through by constantly complaining about my pain levels.  I would have loved to see the egg on his face when he was told what was wrong with the pump, not my head.  The second pump was no better.  I guess they were used to hearing me complain about it not working so they did the same thing.  More meds and turn the pump up.  I had it for 5 years.  When they went in to replace it, same thing.  It had come lose and was dumping morphine inside my body cavity.  If I had known this, I would not have this 3rd pump, but alas, it's working fine...so far.  As for side effects, I find myself talking out loud half asleep and wake remembering I was talking about something I had no idea about what, just stupid talk.  I have trouble staying awake but I wonder if it's something besides the morphine.  I have also been diagnosed with arachnoiditis, fibromyalgia, osteoarthritis and neuropathy.  Last week I had my pump filled and picked up my prescriptions.  When I got home I discovered she had written my prescription for half of what I have been taking for years.  She knew better but she asked how many I was taking a day, I told her 4 and I have no idea why I said 4.  I take 8.  I called her as soon as I discovered this and she more or less said tough shit, deal with it.  She would not give me another so I have to get by until Jan 18th, today Is Dec 7th.  I will be in dts before time for my refill.  I don't know what recourse I have, if any.  I'm calling again Monday, I never see the dr except when getting ready for surgery, once in 5 plus years.  Thanks for listening to me rattle.

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brad, Community Member
3/29/14 9:41pm

I have dilaudid Fentynal baclofen bupivacaine and clonidine

And wish never got it. Tired of all my doctors saying has to go 

because they have no control over it so that said the side effects

never said it cause theeth loss legs feel like lead so 

 

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hammertimeinaz, Community Member
3/ 7/10 11:58pm

i have had my pump now for 8 weeks and the first 3 were magic!  I would kiss the dr. but have had a gradual decrease in the effectiveness.  i have it for chronic back pain and it is located right over my si joint and it quite painful.  I can no longer lay on my back nor can I sit with my lumbar spine against a supportive chair, ie Car seat with lumbar support.  I am experiencing sexual difficulty where I find that I now have ED which was never a problem before.  No dietary issues either but I also have a full colectomy so i have dietary issues to begin with.  My neurologist who implanted the pump will not let me take anything for pain besides the pump, b/c he says it degridates the effectiveness of the morphine.  Hope things are getting better for you! Robert

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focus0725, Community Member
3/24/10 5:25pm

Hello!  Thank you for your response.  Sorry it took me so long to get back to you.  I am still taking Vicodin for pain in addition to the pump, which is very helpful.  No one has ever told me that other medications cannot be taken when the pump is in.  It took me about 4 months to get to the "capacity strength," if you will.  I am still taking the Vicodin, but cutting down. 

 

Because of the nausea, they turned my meds down now in my pump, and subsequently, upped my Vicodin again.  I thought, when the pump was at full strength, I would be able to get off the Vicodin all together.  I am also taking muscle relaxers.  Nothing is effecting the pump effectiveness.  I guess it is a personal opinion, depending on what physician you see as to their beliefs, but the Vicodin does help. 

Hope things are better for you!  Good luck!  Would love to talk to you sometime.

Cindy

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Va, Community Member
4/ 1/10 9:42pm

Just posting to all of you. Have been on significant pain meds to include percocets, oxycontin without much relief with my back pain. Had pump in and morphine didn't work, went to dilaudid and had problems with urination, so now on fentanyl and have been increased and having 6 boluses a day as well plus i am also on all my pain meds and can't come off of them. It has helped my pain at rest, but still with intense pain w/ any activity or can only be out to run errands for a max of 2 hours and then back home to my heating pad. I have had problem with weight gain and abdominal distention. I recently had gallbladder removed and have not ever weighed this much. Have been through every diagnostic test per my GI doctor. Struggle with nausea every day and alternate phenergan with zofran and it doesn't help. The abdominal distention and wt gain is so not me. My ob agreed I look 8 mo pregnant and though it could be ovarian cancer. It's not GI and I have no GI issues at present. We are clueless and am wondering if the pump could be causing this. Plus am having to go to surgery because I have an area of approx 4 inches length by 1 in width and sticking out 1 inch and is very mushy. My dr said it's a complication of the catheter going into the spine and that I have to go through surgery and require pressure dressings and back brace. Anyone out there that has had any of these problems. Am young and feel my body is just flat giving out and hate being on all these meds but can't get pain relief unless is just lie around all the time.

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Gojo, Community Member
5/10/10 9:34pm

I would have your hormones levels checked. I can't say for certain that this is your problem as I am a male. I have had a huge amount of weight gain. My new doctor checked my testosterone level and it was a 35. For my age it should be around 600. This alone can cause a tremendous amount of weight gain and sagging. I'm on hormones now and starting to drop weight and my appetite is nothing like it was before. I have dillaudid and fentanyl in my pump.

 

I hope you feel better and this information helps you.

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Theresa Mooney, Community Member
3/ 9/11 2:40pm

We sounf the same ? Is there anything new they have done for you to HELP?? Im sooo bad  with my back now i have this huge stomach that hurts. I can't get though to the doctor? Im so backd up? . I was 100 lbs now im 130? They state that OH its the meds .? (GI) I m still in sooo much pain my back is killing me I walk with my father every dad notheing is helping..? I have no clothes and i was never ever one to just sit. Now Im finding my self in bed crying in pain? I can't explain it to them. The doc. also put the largest one in me? i had asked for the smaller one befor going in but came out with the lg telling me that way i wont have to have that many refills? i never am able to see him? i sit for ever till its time ti go in and  nothing its like it goes in one ear and out the other? I had a trial pum in 06 and had no problem , with the meds . it was the painclinic? so i passed, Now I found this doc , I trusted him but i get no replys when i try to get in? I never had the dilanudid and baclofen.. I dont like it. my eye sight too is getting bad? but the biggest issue is to have a normal BM and not to feel the PAIN! It seem so hard to get it across just becuz there is no open wound  and blood running down are back . I have had 7 surgerys in all I WILL TAKE ANYHELP SO IF THERE IS ANYONE OUT THERE THAT READS THIS AND CAN HELP PLS DO SO I pray every night for help God Bless everyone with this problem you are all in my prayers and Im glad I found this sight! I hope some one will he I did ask him to talk to my other DOC and what he used BUT NO! ??? Thks Theresa WIS

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bondlover007, Community Member
5/24/12 10:42pm

First of all the older pumps only are 17cc. the new pumps are 20 or 30 cc which means you and your DR don't have to fill up the pumps as offten. When you are on any oral or meds through the punps sometimes it takes me 10 days to have a normanl bm movment. you have to make sure you drink alot of fluids to keep your BM movemt normal.The constrationtration of meds go up every 10 mg until the Dococtor came keep the pain unercontrol. I 'm 50 know and my back has somwhaht been ok but a have Fybrmelghiga. and outher back problems. Thre reserchasing for a diffreent DR for another advice on your moms medical condition.

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tcavner1, Community Member
10/13/11 6:03pm

May I ask you a question?

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tcavner1, Community Member
10/13/11 6:07pm

I'd like to know if Va is still posting.

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Jeff, Community Member
10/24/10 7:16pm

get your dr to give you a higher dose of dilaudid per cc . I get 30 cc conncenntrate per cc plus I get 15 mg oxycodne 6 per day. The pump will not take care of bone pain, leg pain and in my case knee pain . The pump only helps with back injuries and that doesn't mean in a pain reduction. If your not happy with your dr look for a different dr it's wourth finding the right dr.  Good luck

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anna peace be with y, Community Member
2/28/11 7:24pm

hello everyone! i am having my pump taken out on the 12 of march, i have had it since,2004 worked all these yrs.i all so have neck,legs, and graves ,one fall,and car acc. so there for it doe not work for me any more.plus i am having bowel troubles real bad. i read that u can have bowel troubles. not only that.my pain is the pump for some reason ifeel like the pump. is the trouble now plus i afraid of the fact that all they do is fill the pump and that is all they do iwent to the hospital told them that i was very ill .she said to me get your mri)and you can see the dr. i told her that i was sick once you get that your mri you    can see the dr. the next day i went to my other dr. told him i was sick he put me in the hosp. for a week.i was taken to another hosp. at 3:00am to get that mri1.all i can tee all of you is to follow your own mind it will not lead you wrong.peace be with you anna

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jeffbracken99, Community Member
5/25/12 6:48am

You mightt begetting sick if your pump is no longer giving you meds through the pump. You will end up going into wilh withdraw from not having narcartics.in your system. I went through hell for 18 years until I had the pump put in . I;m at a 30mg dose at a constant drip and still take 6 15 mg oxycodone pills to keep the pain under control. If you can't find the right dr keep looking for one. Look on line for Drs with compassion. My Dr Greald Myers lives in Monacca Pa wich is close to the OHIO border. He is the best and the most caring DR that I've ever met. His office # is 724-728-7880 I hope this will help you. They can get you in very quick for a evaluation and to start a tratment plan. I hope this helps Jeff

 

 

 

 

 

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MAGGIE, Community Member
5/24/12 6:21pm

There is no other pain dr or clinic, within 50 miles of my area, who will even see me besides the pain doctor who put my pump in. The main reason/excuse that I am told is "my pain history is too complicated". I am grateful for my pain doctor but he does not communicate very well with me. He also does not believe in any medication for break through pain to help the pump reduce my pain. I had the pump put in april 13, 2012 and feel like I am totally on my own. I have been swelling, extremely, in my legs and ankles, the pump location itself is very uncomfortable and irritating plus I can still feel it move. Also, I had far less constant pain during the trial and when he put the pump in, I was in agony because he elected to keep me awake during the surgery. I am also afraid that he will drop me as a patient if I call his office too much or complain. My family doctor is pretty certain that the placement of the pump is the problem and the reason for my swelling and discomfort.

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DaveT, Community Member
5/25/12 12:54pm

He kept you awake when he put the pump in?? or when they inserted the cathater for the trial? If he kept you awake when he put the pump in that seems wrong to me. I'm thankful that my pain doctor is so good. The guy your going to sounds like a jerk. I had to leave the doctor that put my first pump in...if I wouldn't have gone to see the doctor I'm going to now when I did I may be dead.

 Two problems I had. First problem was that the cathater pulled out of my spine after 2 weeks. I was in withdrawl and obviously severe pain. She told me that it couldn't have pulled out after only 2 weeks. Finally after weeks of suffering she was going to do the dye test but didn't even need to put the dye in because she could see the cathater all twisted up in my back...and not in my spine. The second problem was the cathater causing my spinal fluid to leak out. This should have been obvious to her because I had a pocket of fluid at the base of my spine accompanied by a severe headache (like my head was going to explode) and I was throwing up constantly. I got into my new doctor and he explained that the headache was because my spinal fluid was low and it caused your brain to start pulling away from your scull. He told me what the problem was and that if it had gone on much longer it would have killed me.

 I would call the pump manufacturer and explain the problems to them. They may be problems they have heard before and give you possible solutions, they can at least give you a list of doctors that work with pump patients. I would reccomend finding a new doctor. If you have to drive 60 or 70 miles...then that's what you have to do...but having a GOOD doctor makes all the difference in the world.

Good Luck,

Dave

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maggie, Community Member
6/ 8/12 4:53pm

Thank you for the info. YES, I was awake and remember everything until I was wheeled into recovery. I was shocked and so were his assistants. He is the only pain doctor within 50 miles of me who will treat me. Also, the state to the north of me, the closest state with more pain doctors, does not usually take ANYONE from my state.  I have been at or contacted medical centers all around the midwest. I too have a fluid filled cyst on my lower back. I was told to wear my binder when it swelled up. I hope it won't start leaking---it is good size. You really have been helpful and it sounds like, even with all the pitfalls and set backs, it is worth it. Thank you for the encouragement.

maggie

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DaveT, Community Member
6/ 9/12 11:40am

If you start getting bad head aches you need to see someone immediately!! There shouldn't be a pocket of fluid. I mean think about it...unless there is a leak somewhere why would a pocket of fluid form?? I mentioned before to call the pump manufacturer. If you haven't done that I would. They are usually very interested in these kind of problems. They even sent a rep to the doctors office in my case.

 When the pump is working right it is worth it...but problems like your experiencing can be very dangerous. I don't know how you get through to this doctor that what your experiencing is not normal. Is it a medtronic pump that you have??

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maggie, Community Member
6/11/12 8:12pm

yes, it is. My doctor acted like the pocket of fluid is normal. I will contact medtronic and thank you for the warning. I appreciate your HONEST info!

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laurie, Community Member
2/24/14 11:25am

I have had the pump for more then 3 years when I first had it put in it worked great I did have swelling in my hands blew it off! Now I am having more pain than ever and I am now being checked for lemphadema by my family physician.  My face turns red and swells up and my right arm and hand is very swollen at times to wear I cant close my hand. My mother also has the morephine pump from a failed back surgery she got hers after I got mine now she was diagnosed with cellulitis in both her legs and I believe that it is the result from the pump.  I looked up lemphadema and there was a picture of a swollen hand caused from lemphadema that can turn into cellulitis. I will be seeing my pain pump doctor tomorrow and letting him know what is going on, cause if u dont take care of yourself no one else will so be sure to be adamant about what is going on with you! Good Luck and God Bless

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Dawny, Community Member
5/24/10 6:27pm

I don't know about yr side effect, but here are mine,   Got my pump on 4/19/2010. They put morpine in the pump, I can't take morphine by mouth get deathly ill very weird side effects.Now I have dilaudid first days were okay still had morphine side effect,so now it has been 6day and I have weird side effect.My eyes sight as different fuzzy,nauesa really bad, rining in my ears, I know this sounds werid but I have not urge to go the bathroom,I must tell mtself to try to go and it feels like I am filling upall over ,lost 20 pound taste has changed. It is very hard to tell the drs they don't quite believe it. I want it out

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Jeff, Community Member
10/24/10 7:08pm

I've had my pump for 6 + years. I also have dilaudid in my pump. Being sick is from withdraw from morphine. It takes about 2-3 weeks to get the morphine out of your system.In my case with the dilaudid I have little taste, I can't sneeze,vision problems and bathroom problems. Your biles won't move from constitpation and I have problems peeing. I also lost 20 + lbs because the meds slow down your heartrate and your metabolism slows down causing you not to eat

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DaveT, Community Member
12/ 1/10 11:53am

I had to have my first pump taken out because of an infection after about 3 months. I've had problems with different medications...but I'm still trying because the morphine worked for me for two weeks before it started making me sick. I can tell you that with the right medication these things give you pain relief like nothing else I've tried. I sometimes feel like I'm at the end of my rope with this thing too, but remembering what that two weeks pain relief was like keeps me searching for the right dose of the right medication. Good luck.

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ERIC M., Community Member
10/ 9/10 8:19pm

  I just read about you having A pain pump with Dilaudid and I had one implated over 6 years ago. I have had a few side effects the 1st. few months but luckily have an excellent physician that specializes in this area. Some of the side effects that I had at first were:nausea,tiredness and weakness.I also had a very weird side effect when my doctor initially gave me something in my pump to try to counter my nausea.My feet swelled up. This was temporary and lasted only a few days (until he removed this medicine out of the pump).

  The thing that I am dealing with right now is withdrawal!!!!!

  Man oh Man!!!!  My pump stopped working after 6 and 1/2 years and the withdrawal symptems are excrusiating.I had to deal with stomach cramping like no tommorrow.Also,insomnia,severe weakness and tiredness as well as tremors and shakes. So,I suggust that you replace the pump implate before it gives out.

                               Hope this helps !!!

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DaveT, Community Member
12/ 1/10 11:43am

How many times did you have to increase the doseage in the 6 1/2 years??

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Jeff, Community Member
10/24/10 6:30pm

I have had the Medtronic pump for 6 + years and I also have Dalaudid in the pump. My dose  is 30mg concintrate per cc. I haven't had any side affects with the meds except for I don't get enough sleep.If you tell me what side affects you have been experiencing it's possible I had the same effects but I chalked them up to oral meds. 

 

Thank You

 

Moderator's Note: Please do not include personal information such as email addresses and phone numbers when posting.

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DaveT, Community Member
12/ 1/10 11:47am

Did the dilaudid ever cause you to itch everywhere?? The morphine was ok with me for two weeks...then my cathater pulled out and when they went back in and fixed that the morphine stated making me sick. Tried fentanyl and it increased my heart rate too high. Now dilaudid is making me itch...sometimes feels like bugs crawling all over me. My md says this usually doesn't happen with this medication. Is anyone else experiancing this problem??

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Robbi, Community Member
12/ 1/10 4:48pm

I am still on oral meds.  I missed the appt. for pump so now I must wait.  Maybe it is a good thing because I am hearing a lot of problems with the pump.  Yes, I have experienced a lot of itching with the opiates. That is pretty common along with constipation, nausea, tireness, speed feelings in the evening.  Lots of evenings I was checking my house for bugs but it was the meds.  Since I changed to Dilaudid I don't itch.  But the contipation is really a problem.  It seems like there are plenty of side effects but it depends on the person, how it affects them.....hope you can find something that you can tolerate.....Robbi

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BellaGrey, Community Member
12/27/10 4:03am

I do not have a pain pump, but I inject Dilaudid on my own.  Yes, it will make you itch.  Especially your nose.  If I inject more than 2mg then the itching will begin. See solution below. I take this for Migraines.  My migraines are very severe and I do not respond to oral meds. Not even 8mg pill form Dilaudid. I have been taking this for a year now, so I can offer a solution that works for me.  Before I inject, I take 25mg benadryl, or I swallow childrens liquid benadryl which is 12.5 mg.  The liquid works faster.  Itching is one of the biggest side effects to Dilaudid.  If my Migraine is full force, I take a either 25mg or 12.5 benadryl, 25mg phengran (for nausea) usually suppositories, because if you are throwing up pill form for nausea won't stay down, I wait 15-20minutes and then I inject 1 mg -2mg Dilaudid slowly.  I understand the bug crawling feeling. It runs through out your whole body. 

If possible can someone tell me where they place pain pumps? How is the medication given?  Is this something you do at home? 

It sounds like the pain pump would be a good alternative.  Injecting myself in my stomach or hip is not painful, but if I am out in public injecting is not the most sanitary solution. Also, quite a bit of it leaks out right afterwards. 

A couple more questions, is the pain pump placed near the source of your pain? Or does it go directly into your blood stream?  Last question how may mg. of Dilaudid are you given?  I am sorry for all the questions, but if it works for you all maybe it would work for me too.  Sometimes my medicine won't get rid of my pain, then I have to go to the hospital for 4 days and get it administered through an IV.  SO for 4 days about 14X a year I go in and get 4mg Dilaudid every 3 hours.  I hope my benadryl solution works for you. Thanks for any advice someone may be able to give me. I appreciate it. BellaGrey

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DaveT, Community Member
12/27/10 9:34am

Thank you for your response. I do have other side effects from opiates also. They actually increase my heart rate and cause anxiety...so I already take xanax for that. If I take benedryl or fenegren on top of that I will be sleeping all the time. It is interesting that it is when you hit a certain dose that your itching begins also...this is good info for my md. The pump is put under the skin on your stomache. If you have an average amount of body fat it isn't that noticable. There are different linds of pumps. The medtronic pump delivers a slow dose of medication 1.2 mg slowly over a 24 hour period. It can be programmed to deliver doses at a certain time of day...but there is nothing to give you the medication "as needed". There are some other pumps on the market that you use a magnet and can make it release medication on your own. The medication goes from the pump into your spinal fluid and straight to the brain. You may want to ake your pain md. The pump is more for 24/7 relief from constant pain...but a different brand of pump may be an alternative for you. Good luck. : )

 

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4way53, Community Member
2/16/11 8:13pm

I AM53YR OLD MALE.GOT MY PUMO IN 2003. DILADID. I WENT FROM 2MG A DAY,HAD TO TUUN IT UP EVREY FEW MONTHS, AND ENDED UP ON 12MG A DAY?(DONT NO FOR SURE ABOUT DOSSAGE, JUST THAT I WENT FROM 2 TO 12 AND I THOUGHT MY BACK WAS JUST GETTING WORSE) AFTER ABOUT 2 YR I COULDN'T STAND ON CONCREATE ALL DAY ANYMORE AND HAD TO GET ON DISABILITY. LOST MY INSURANCE AND HAD TO PAY OVER $800.00 A MONTH! COULDN'T AFFORD IT SO I HAD TO EASE DOWN AND TURN IT OFF. NOW I REALISE MY BACK WAS NOT GETTING WORSE, MY BODY WAS BUILDING UP A TOLERANCE TO DILADID(50 TIMES STRONGER THAN MORPHINE, I THINK) NOW I'M IN CONSTANT PAIN 24/7! AND THREE 10MG PERCOCETS JUST DULLS THE PAIN A LITTLE BIT.MAYBE 25% AT BEST. SO MAKE SURE YOU WILL BE ABLE TO AFFORD IT IF YOU LOSE YOUR INSURANCE LIKE I DID! I NEVER HAVE ENOUGH MEDS FOR MY PAIN! AT BEST I HAVE ENOUGH FOR 1 DOSE A DAY, AND 2 DOESES EVRY 3RD DAY! I HAVE TO BUY MEDS OFF THE STREET AND ITS VERY EXPENSIVE! I DON'T NO WHAT I'M GOING TO DO! I DON'T HAVE MUCH OF A FUTURE TO LOOK FOWARD TO. JUST MORE PAIN!!!!!!! I HOPE THIS HELLP'S SOMEBODY!!!!!!!!!

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DaveT, Community Member
3/ 9/11 3:33pm

Are you collecting Social Security?? You should qualify for medicare. I don't get much relief from my pump...but it more effective than the pills. I'm at 1.2 mg a day. My doctor wants to turn it up...but I know where that leads. I have told him I need to stay at the lower dose as long as I can. I do use 25mgh fentanyl patches with it which helps. I don't use the patches 24/7 because I know that will just build up tolerence. I'm not able to work. I collect disability and Social Security. Fortunately we have insurance through my wifes work. It is getting expensive...but worth it at this point. You've got the right idea. If you can get on medicare...or medicaid depending on your financial situation. Use just enough meds to dull the pain...then I would try fentanyl patches but only use them a couple times a week for 18-24 hours. That should at least give you a couple days a week to have some kind of social life. I know what you mean about standing up. I can't stand for 10 minutes...I can't sit upright for more than 30. I have a zero gravity chair which gives me some relief. I almost live in it. Hope things get better for you my friend. I know what your going through. I think the most any of us can hope for is relief a couple days a week!!

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Rodeny, Community Member
2/27/11 9:06pm

Hello, It great to chat to someone that is going throught what I am. I have had my pain pump for around 7 years now and there are side effect that I have everyday. Just like the rest of you I am drowy alot of the day and I have falling a sleep doing just about everything. I have failed back surgery in 3-2003. My other side effects are constipated, hard to urine,and I get headache that do not go away that easy. I just came across this site by incident but I want to let you and other know the side effects that I have had most of the time and to hear what side effects you guy are having. Thank you Rodney

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hawk, Community Member
5/24/11 4:04pm

Hi to everyone out there in the same type of situation that I am in. I have had 6 back surgeries which include a spinal cord stimulator and fussion and now have a pain pump, I am still at a lower level now on the pump then before, I was taking 100mg fent patch every 48hrs and 30mg oxy every 6hrs. I now have Dilaudid and a numbing drug in the pump. But i still take the 30mg oxy every 6hrs along with a relaxer and a fibromialiga drug. I still get sick alot and have no appatite or sex drive but the pain is now about a 5-6 steady instead of 9-10 but I do still have bad spikes that will stop me cold. I can sit for abour 10min then I have to move or the pain keeps going up. I get 2-3 hrs of sleep a nite if i have a good nite. I am only 35yrs old and not being able to work is killing me. I am hoping that this will allow me to be able to get back to work when we get it all figured out. I do know that fent is the top dog when it comes to helping with the pain but its also hell to get off of. When I got my pump I went from the 100mg /48 and pills to the pump set at .015 with dilaudid with my pills but no patch, it was hell for 5 days but better now. I still need adjustments done on my pump but with the pump and the SCS (its always on shocking my spine) that I might be able to get back to a normal type of life I ahve a wife and 2 girls. I am also very depressed and most of the time just want the pain to stop no matter what so I not the happiest person but I try for my family. I hoe that anyone with thsi type of constant pain might be able to find something to help.

 

R/

A

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DaveT, Community Member
5/24/11 4:21pm

Sorry to hear about all your problems. Are you sure the pump is set to .015...and not 1.5. I have the same meds in mine. I'm at 1.2 mg a day of dilaudid and 2.4 of the bupilacain (spelling?) Did they try morphine in your pump first? I went from 100mcgh patch every 48 hour plus other drugs to 2.5 mg of morphine and it was the best I felt in years...then the cathater pulled out...it's been down hill since then. At this point I really don't think my pump is working. I have a friend who is having his taken out because of a mass on the tip. I'm sure you've heard about that problem. I'm beginning to think it's a lot more common than they want to admit. I've had various drugs in mine since then...all lead to problems. The most success I've had is getting some meds through the pump...and using a 25 or 50 mcgh patch. Some doctors might not like doing that...but it works. I go off and on the patches...I don't want to stay on them all the time. I know about the work thing. I was at the peak of my career when my back started falling apart. I'm still hoping to get back...I'm 49 and haven't been able to work for 5 years. The doctors have said I probably never will. If you need someone to talk to my e-mail address is dave_t435@yahoo.com.

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Lawna Thomas, Community Member
6/26/11 12:10am

It is not pump related.  It is the medicine.  I had  a pain pump put in me  5 months ago and used Dilaudid as my first medicine. Although I am glad I have it now, there was alot of issues  at first.  It had been very difficult  for my body to adjust to a small hockey puc inside your body... until now. 

 Also... You have to get the medicine... that is right for you and it may take alot of trial and error before you can settle into the reason you got it.  To relieve chronic pain.  It is NOT EASY ! 

The usual side effects of Dilaudid is itching alot, and a sedating effect.  Otherwise... the doctors say, " it is thier drug of choice for patients."   It gives you the best and long  relieving  control for your pain.  Moriphine( may work for you however you have itching.)  or Fentinol.(which is too short acting.)

  I also had trouble with the placement area of the pump, so I had a 'pump revision' done just last week.  Thank God for medical insurance!.  I had the pump placed higher up on my right side. It is now more snug and it seems to fit.  I lost my nice figure over this, but there had to be a trade off. 

  My medicine now is Fentinol.  Again it is too short acting for my chronic pain.  I am going back to Dilaudid   Is your pump truned up too high or turned too low.  That, you need to consider.

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BionicWomen, Community Member
11/21/11 7:31pm

May I ask, where did you end up having them put the pump. My doctor said instead of putting it in my back (because it would be to painfull there) he was going to put it in the front and wrap around the cathader to my back. do you have a suggestion on where I should ask the Dr. to put the pump for the least amount of pain and side effects? Thanks

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maggie, Community Member
6/ 8/12 5:10pm

You were given a choice as to placement? I was never asked, not really ever informed about placement.

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Linda Renfrow-Mosele, Community Member
8/25/11 2:04pm

I was wondering if anyone was having problems like I am. First I had trouble with urination.Or should I say trouble urinating. I have to catherize myself most of the tim. I now have drop foot on lt. leg and numbness and tingling in my hands and both feet. For the last month I now have burning in my hands. They feel like they are burnt.I have had so many test to determine my diagnosis and not one Dr. agrees. The only thing they say is "You have a very complicated case"? I have been told I have MS, Fibomyalgia and perpherial neuropathy. I wish someone would help me.Tell me your side effects.

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tcavner1, Community Member
10/13/11 11:02pm

Well, I'm new to all this so please bear with me...I have a pump with Dilaudid and Rivibacaine, which I understand this is just a numbing agent. Since I have had the Dilaudid I have had a fit with staying awake. I can go to sleep in the middle of a sentence. I tried to read a book to my son last nite before bed and he just finally put his fingers to my lips and said 'tomorrow mommy'. I don't dare drive especially with my son in the car. Bad thing is, I'm getting no pain relief. Seems like I sleep to get relief from the pain. Now what do I do?

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tcavner1, Community Member
10/15/11 10:56pm

I also have a Medtronic pain pump with dilaudid and ribivacaine. I also have some weird side effects that my doc just shrugs off. For one, I'm not getting much relief from the pain. No. I'm not getting ANY relief, period. Sometimes I have tinnitus so bad that I scream, cry and smack my forehead trying to make it stop. Sometimes it's tolerable and sometimes it doesn't show itself at all. I have gained a bunch of weight but most of it comes from a distended stomach. It's so big I look like I'm about to have a baby and it is as hard as a rock! I have to stay flat in order to breathe. I can't eat a lot in one sitting. The scariest thing though is my fingers jump and jerk all the time, my lips, and tongue do the same thing and it makes me scared when my words won't come out. I lose my words, too. My short-term memory is shot. Just makes me wonder with that foreign catheter running up with my spinal cord...

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DaveT, Community Member
10/17/11 11:58am

They put bupivacain in mine for a short period of time. It's supposed to be a numbing agent as well...however it increased my pain. It felt like it was burning the nerves. It started a few days after he put it in with the dilaudid. It started out only hitting me once every few hours. it would make my low back and legs burn if I was walking I would have to stop because I would lose control of my legs. Went back to the dr. and he said he didn't think it was the medication because it wasn't constant. By three weeks it was constant and I demanded he take it out...that problem solved. I went from 1.2 mg a day of dilaudid back to a 50mcgh patch of fentanyl. I went through withdrawls from the dilaudid but at the same time had better pain relief in my back??? As I mentioned I also use a 25 mcgh patch occasionally. I got relief from the 50 patch for a few weeks but now the relief is minimal. I assume tolerance is catching back up.  If some of your problems started when they added the nerve blocker I would question if that isn't part of the problem. Good luck

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BionicWomen, Community Member
11/21/11 6:59pm

I have a spinal cord stimulator now for 4 years. Dec 20th they are going to replace it and put in a new stim since this one is having a hard time holing its charge lately. They are also going to put in a medtronic pain pump. However, they are going to use this new medicane called PriAlt. I am nervious because they going to put the pump in my stomach and the stem in my back. I was told they I will have to be real carefull for at least 2months. because I was told today that the pump will flip if I bend over to put on my shoes etc.. Has anyone I had anything like this happen with their pump. Also, has anybody had any expericne with this new medicane in the pump ( PriAlt )?? Thank you everyone

 

 

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Terri, Community Member
3/18/12 6:17pm
I have had my Medtronic pain pump since 04' I have had trouble with morphine and came off of it and was put on fentanyl pain pathways 25 mcg every 72 hrs. Then came off them but was on several other oral meds as well. I had several complications along the way with the pump failing and causing me to go thru withdrawal and migraines. I was hospitalized several times and had a new pump put in 07' and started a trial drug of prialt and clonidine. It had to be increases slowly and then they added fentanyl as well along with 1800 mg of neurontin, 25 mg of bacolfin, trazodione to sleep up to 400 mg and still no sleep and also on 1 mg of ativan at bt, as well as taking 400 mcg if oral fentanyl a day, and also taking Wellbutrin 450xl mg a day due to serve depression and anxiety. The pain never goes away, I was told I have one of the worse spines my pain dr has seen. I am able to walk some but in and out of a wheelchair, I can't sleep or thats all I want to do. I am thankful for the pump, but recently they took me off the prialt which I thought was working great but I hit the ceiling with it so, now I'm back in Ohio where my dr us in Wv and is a world renouned dr in pain pumps and he is taking me off all the oral fentanly which I have had excruiting pain wih vomiting, shakes, thought u was havin a heart attack but came back fine, I have constipation, as well as I have a dormant kidney disease thank God it does not give me trouble. I have sweats, and for the longest time I have had numbness and tingling on my entire left side. I feel like in freezing in that side but will be sweating and wringing wet at the same time. The dr is off setting the withdrawal with 650mg of Percocet which I feel like is candy compared to what I have been on. I feel like I'm going crazy and u don't want to live like this. The only thing that keeps me going is my faith in God and believing my family lives me and trusting God to help me. I'm not going to lie I feel hopeless at times and like a burden. I live in Fl partime due to the cold here. I am permanently disables and in federal workers comp which is trying to take the medication of fentanyl away due to now they say it is only for cancer treatment, yet they approved it years ago and it does helpe I feel. I have come to except that this is a fight I am not going to give up. I am weak and it seems I can't get any help, I have a Congressman, Bill Johnson here in Oh and a Senator Marko Rubio in Fl both tryig to get workers comp to respond and all they want to say is I'm getting it now but they are taking it away although it is the only thing helping me. My dr here is trying to get a thing added that I give myself bolus as needed 3-4x a day as needed and slowly take all the oral meds away. This scares me greatly yet, I would live to be off all of them. The pain is almost unbearable and the cold on my left side with the pain in my back and neck kills me as well. I feel I am just a dollar sign to those who have no idea what I go through daily, as well as my family what they must go thru to take care of me when I har a husband who is disabled as well, who lost his entire esphogus and part of his stomach 5 yrs ago and needs care our children and church family have been such a blessing to us. My dr in Fl provided the medicine to me out of his own pocket due to WC not paying the bills cause he said he took an oath to care for patients and not let me die, I do not know where to turn for help. I have a fusion in my back from S1-L4 and in my neck from C1-7 I have hardware that is bent and broken in both places and I har some changes in L3-4 now as well. I feel like I'm dying and I have been faced with halucinations, and all kinda of forgetfullness and wanting I just give up and my hubby said if they take my life doing all this he wants someone to know what they are doing and that is why I'm writing this in here I hope it helps someone else as well. There are many different medications they can use but the fentanyl works the best and it is hard when someone sitting behind a desk can play God and take what gives you some sort I'd relief and tell you sorry we don't care, we are not goin to help you. Also if anyone knows of a good pain dr in the Tampa to Naples area that treats pain pump patients and will take WC please reply cause I need help if I make it that far. I feel like the drs have throwing there hands up and giving up on helping me and I am suffering the effects. I need help and I do believe in the pump but I just want an answer as well on which way to go, with medications and is it normal what I'm feeling with this cold sensation on my entire left side and all that comes with it??? I need HELP soon and I feel I'm running out of time. I did see a dr in Bradenton fl but they quit seeing me due to WC not paying bills. Also, I have a lawyer who used to care and help me but he does not seem to anymore and I don't know who to help me fight for my rights as a patient. I know it seems I am rambling but there is so much more that I could write a book on it. If anyone has felt with withdrawals and knows how long I will go thru them or any info please text me and let me know. If you know of a better dr possibly in either state I would live to hear from you . Reply
Darth Emma, Community Member
1/27/12 5:55pm

I recently had a Medtronic pain pump implanted. I had problems with the morphine that was initially in the pump. I had hives, itching, urinary retention, and swollen feet. The doctor switched me to 0.5 dilaudid and started turned the pump down to 0.05 ml/day. All the side  effects went away except the swollen feet. But, I was getting no pain relief. 

 

This week, he turned the pump up to 0.08  ml/day and I'm stll getting no pain relief, but my feet are stills swollen.

 

I go in again next week to have him turn the pump up again.

 

Are swollen feet and ankles a common problem with dilaudid when administered intrathecally? I have taken oral dilaudid and by IV before with no swelling in my feet.

 

Also, at what rate do you folks get some relief when usuing dilaudid?

 

I'm  very glad I found this forum!

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chris franchino, Community Member
2/ 8/12 4:28am

Hi, my name is Chris. I broke up my back pretty bad. Nine years ago about six months ago they put the pump in me, and there is a lot of side effects different for different people, but a lot of them the same. If you would like to know more about this. You can e-mail me at my e-mail address chrisjofranchino@yahoo.com

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GRACEABIDES84, Community Member
4/13/12 12:36am

I AM ALSO HAVING SOME PROBLEMS. MY DOCTOR KEEPS TRYING DIFFERENT THINGS FOR SKIN CONDICTIONS. AFTER SEARCHING STAFF INFECTIONS. I BELIEVE I HAVE A SERIOUS INFECTION. I HAVE ANOTHER APPOINTMENT LESS THE FOURTEEN DAYS AWAY. I PLAN TO HIT HIM WITH WHAT I HAVE FOUND OUT ABOUT STAFF INFECTIONS. I LIKED TO KNOW SOME MORE ABOUT YOUR SITUATION ALSO. I HAVE HAD MY PUMP FOR A LONG TIME. HOWEVER I FOUND OUT I HAD BREAST CANCER IN 2008. ENDED UP HAVING TO HAVE MY RIGHT BREAST COMPLETELY REMOVED. WHEN I GOT HOME WITHIN A FEW DAYS I REALIZED THAT I HAD A STAFF INFECTION. I ENDED UP HAVING TO HAVE A PORT PUT IN SO I COULD DO THE ANTIBIOTICS AT HOME. THAT LASTED ABOUT SIX WEEKS.  IT WAS SOMETIME LATER I NOTICED A LITTLE REDNESS. NOW IT JUST KEEPS GETTING LARGER AND ANGRIER LOOKING. HAS YOUR PUMP HELED YOU AT ALL WITH YOUR PAIN. MY PAIN, IS LOCATED  IN MY LEFT SIDE LOW BACK AND HIP. IT IS NOW RETURNING TO MY LEG ALSO. I HAVE BEEN BEEN FIGHTING THIS BATTLE FOR OVER FORTY YEARS. THE PAIN PUMP HAS HELPED. HOWEVER I AM STILL NOT AT A PAIN LEVEL THAT I AM VERY COMFORTABLE WITH. GOOD LUCK TO YOU AND MY GOD BRING YOU PEACE AND COMFORT, TO WHERE EVER YOU ARE.

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DaveT, Community Member
4/13/12 11:21am

Sorry to hear about all the problems your having. I had to have my first pump removed because of infection. They did emergency surgery on a Sunday morning. They told me they had to take it out because if the infection got into my spinal fluid because of the cathater it was over. My infection was at the pump site so it is a little different situation than yours. I currently have saline in my pump and am using fentanyl patches.

 The only way I have found to get relief is to go down on the meds and really suffer for a few weeks then go back up. The few weeks is miserable but I do get pretty good relief when I go back up. I'm starting to go up and down more frequently so the bad isn't quite as bad. I've come to the realization that there is no such thing as round the clock relief unless you continue to go up and up on the meds. My body doesn't handle the meds very well so I've found this to be the best option. Good luck to you.

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Pita53, Community Member
8/10/12 5:48pm

I have had my pump, since Feb. 3rd. I started out with dilaudid, and was semi comatose until June. I could not wake up, and could not stop vomiting.

I was changed to Fentanyl, and although I am still tired, it is not nearly as bad as it was, and hopefully I will get use to it. I now have no problem with N/V.

I pray that this works, so far, so good.

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HShires, Community Member
9/ 6/12 3:21pm

Hi all. I hope this thread is still active. My story is long. I will give as much info as possible to hopefully get some good advise.

 

I am almost 40 and broke my back at L4 and L5 when I was 13. I lived with chronic daily pain and even gave birth. Over the course of years my pain level escalated. I was sent for pt and chiro. In 2006 I was to the point I could no longer raise my right leg and I was rapidly gaining weight and loosing sleep. I saw a surgeon who ordered a CT Myelogram but the radiologist disregarded the order and did ANOTHER MRI. The surgeon was furious because he couldn't see well enough from those images to ascertain what the problem was. He could tell from X-Ray that my pedicle and facet seemed abnormal and even saw that I didn't have a visible L5. My insurance would not authorize any more imaging. My GP said I likely had degenerative disc and loint disease and I would probably have to resign myself to the fact that I would be on pain medication the rest of my life. As a person recovering from cocaine addiction (awesome for pain management!) I was disheartened by the idea of being on pain meds long term. At that point I had already been on Tramadol 50mg increased to 200mg daily for almost a year. I found a new doctor!

 

My new doctor agreed that pain meds were a poor choice for a long term solution. She sent me for epidural injections and pt to see if the combination would help. The doctor administering epidural injections had a hell of a time placing the needle and complained of hitting bone where there should not be. I had close to a dozen injections at different locations throughout my lower back L3-S1 and in the SI joint. Every time I had an injection I would feel releif for a few hours from the Marcane but the next day and for a week after I felt like I had been kicked by a mule! PT was crippling me to the point I needed assistance to my car after a session and I frequently vomited from the pain. I would have to take it easy for several days and by the time I felt able to move again, it was time for my next PT session. My life was spiraling out of control. I was frequently falling or losing my balance. Standing to make a peanut butter snadwich was sheer agony. In 2008 my doctor determined it was time to send me to a specialist. I had to put that on hold though because I discovered I was pregnant. I cannot even describe how painful it is to be overweight and pregnant with a lower back problem! Then liek a crazy person or a cruel joke of nature, I found myself pregnant AGAIN 4 months after my (4th son) baby was born! The pregnancy was unexpected but my husband and I were determined to make the best of it. 4 months after my daughter was born I saw a surgeon who ordered a CT. He was able to readily see from the images that the majority of my L4 was crushed and my L5 was completely obliterated. He also noted a large (7mm) cyst/tumor on my L5 nerve root which he blamed for my inability to raise my right leg. He was uncertain that surgery would relieve my pain but we both felt that a fusion and removal of the tumor would be at least moderately beneficial. In Oct of 2010 I had surgery. I was supposed to have 2 small (2 cm) incisions on either side of my spine and be to the recovery room within 3-4 hours. 7 1/2 hours and a 5 inch and 7 inch incision later I was wheeled to recovery. The surgeon told my anxious husband that it was "UGLY in there". Apparently bone fragments had been migrating around and irratating tissue. The tumor was a combination of different body materials that were collecting on my nerve roots. Initially I was in an inordinate amount of pain but by Thanksgiving I was off all pain medication! I could walk and bend and do normal daily activities with just a small amount of soft tissue surgical pain. I saw the surgeon at the beginning of Dec and he charted that he was shocked at the degree of sucess and speed of my recovery. By the New Year I was planning hiking trips for the spring with my husband. Then...

 

In march of 2011 I was hit by a VW bus...HARD! He t-boned me on the right side of my Hyundai Accent and pushed me over three lanes of traffic. I knew right away that all my plans were crushed. My body immediately hurt again. Imaging revealed that he had caused whiplash fractures throughout my lumbar, sacrum and coccyx. I saw the surgeon and he encouraged me to take it easy for a few months and hope that my pain would resolve. It didn't. I was sent in for diagnostic injections to isolate the location of my pain, which had migrated almost entirely to the left side. After 6 or 7 more injections, my physiatrist suggested rhizotomy (nerve cauterization). HELL NO!!! I asked about a spinal cord stimulator and we decided to give it a try. The trial waas difficult to place because of stenosis. I had a lot of ribcage stimulation but the physiartrist and Med-Tronic rep assured me that would resolve. I was sent to a neurosurgeon that has performed 1000's of stimulator implants. I was to get the paddle lead. Again, the procedure was not as simple as they had anticipated. My initial post surgery complication was excrutiating chest pain that literally took my breath away. My stim wasn't even turned on yet so I was sent in to have heart and gall bladder checked. All my organs seemed to be fine. The only relief I got was when I would lay on my stomach, not a practical position for a mother of two toddlers! My Med-Tronic rep theorized that it might be because of swelling and the paddles were pressing on and irritating a nerve path. At 3 weeks post-op he turned on the stim to see if the irritation would resolve. It didn't and after about 4 days my battery died. They had forgotten to give me the charging system when I left the hospital. UGH! I tried tracking it down but nobody knew where it was. I had a follow up scheduled with the neurosurgeon and hoped maybe he had the charger. Meanwhile, getting any refills was a nightmare. The staff at my GP's office couldn't seem to wrap their minds around the idea that I was still in pain, both from the surgery, two long incisions, and my chronic pain from the accident. What a circus! They treated me like a common street junkie and all I asked for was a refill on my usual medication, Tramadol, which at this point I was up to 400mg daily, the maximum. Anyway, the charger wasn't with the surgeon, it had never been ordered! Two weeks later it arrived. I had miserable rib stimulation that felt like I had a psychotic ball launcher in my chest and my legs and feet felt like bags of Jiffy Pop on speed with pins and needles. Worse was the fact that the only way I could get it to calm and redirect the stim to my lower back was to lay flat on my belly like in the operating room or to bend backwards like I was doing the limbo. Again, not practical! Med-Tronic rep tried multiple times to re-program to no avail. He finally threw up his hands and sent me back to physiatrist who again recommended rhizotomy. Again I said no. Rhizo offers a few months of relief if any and needs repeat procedures. The gut that hit me only had $300,000 worth of coverage and I was rapidly approaching the quarter million mark in medical expenses and still have an attorney to pay. There is no way I can afford to pay for repeat procedures. Besides, I have a stim in place, lets make it work! He suggested several other options including one that would require switching to a different stim manufacturer. UGH! That brings us to about late June of 2012. At that point I refused to recharge my stim because I could no longer tolerate the sickening punches and the leg stim was making it difficult to walk plus, I still had NO lower back pain management. My Tramadol no longer works, I've started taking 150mg in the am and 100mg around noon and another 150mg in the evening. Not the recommended dosing structure but it is pointless otherwise. I am afraid to take more than 400mg because everything I've read states that 400 is the maximum daily dose. On July 23 my original back surgeon sent me in for a CT Myelogram---hmmm, seems I was ordered one of those before. The CT showed that my fusion was complete at L3-S1 on the right side but the replacement bone matter had been knocked out and I had zero fusion on the left side. My stim is palced at T6-8 and one doc (the one that placed it) says it is in the right place and the other (the one thaqt did my fusion) says that it isn't and that is why I am getting rib/leg stim. I am in limbo now. My GP has referred me to a pain med management doc to try Suboxone which I am reluctant to do. This morning, September 6 2012, my neurosurgeon calls he is recommending a trial at a different level and/or a pain pump. I have been opposed to the pain pump because I want to be off meds but now I realize it may be my only hope for some semblance of normalcy and freesdom from pain that limits my life so much and interferes with my sleep, sex life, work, playing with my small children, making dinner, cleaning house...notice all those things are normal life stuff, nothing extraordinary like biking or hiking or bungee jumping. I just want to function!!! Lastly, I am allergic to Morphine and Dilaudid. Both have put me into anaphylactic shock. I have not yet had a reaction to Fentanyl but it seems there are a lot of precautionary notices on long term use of Fentanyl. And it also seems that people have to switch around with medications quite a bit. Baclofen and Methacarbamol seem to help a bit for the muscle spasms but my GP won't refill my prescriptions for either of those.

 

Any input???

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HShires, Community Member
9/ 6/12 3:26pm

BTW: My name is Heidi:) And, on average, what is the annual cost of the pump?

Reply
john begovatz, Community Member
12/11/12 6:22pm

johnb 8507  had a pump put in back in 2009 the pump filled with dilauded the problems started with in a week . severe diarrhea urinary retenion hot flashing and as time went it made my pain worse not better so the doctor kept increasing my dose cousing me to lose three years of my life it was not till my medicare lapst and he dropped me as a a patient that i noticed some thing is wrong i was going in to a rage over nothing and could not fiqure out why it was the meds  after i looked into it the pump was not meant to use dilauded in it and after 6 months of withdrawl they admited that they could not stop my constant flu and throbbing body pain they put a low dose of dilauded back in . this med is not meant for long acting pain relief it is meant for end of life cancer pain if you can do not let them start it good luck .

 

Reply
Erics, Community Member
12/17/12 5:07pm
Ive hade diluadid for over a year now, my biggest side affect is perfuse sweating up and dowm my spine. Alomg with a strange rash above my ankles. Both supsided when my pump had to be turened off for almost a month when they fould the pump when changing too sufentenal. This caused to get very ill and ended up in the hospital. And of coarse i get to deal with the withdraws of turnimg the pump off abruptly Reply
colonel, Community Member
12/23/12 3:39pm

my wife has had one for 15 years with dilaudid, the higher the dose the more edgy, hateful she gets----every one and everything bothers her. never a peaceful moment

Reply
Denise savino, Community Member
1/12/13 12:43am
I have a pump as well and it mad a infection by my belly button it's real thin skin like tissue and is purple in colar. I have multiple sclerosis and panceas prob. Do I go to hospital I'm on levoxin for a week and it the same. I would go to dr but he is out till the sixteenth if it open what is that good or bed. It seem to be pushing it out. I'm scared and have been real week from it. Can't eat because the med is 500 MSG. Do I go to er? Is this normal? Ciao Denise Reply
kizann712, Community Member
7/18/13 1:05pm

I really hate to see so many people struggling with their pumps and or the medicine. I am glad I didn't come and visit this site before I chose to get a pump. I was in a wheelchair at 32 due to pain and 13 surgeries. A girl hit me while text messaging and driving. She was fine but I had knee, wrist, back, and neck surgeries. Needless to say, I've only had my pump since July 5, 2013, and just got my staples out. I have Prialt in my pump I am at .49 a day and ALL of my pain is gone except when night rolls around then it is hard to sleep. I do a lot of tossing and turning and can't get comfortable. The surgery wasn't bad in fact I guess because my pain tolerance is so high, I didn't really have pain from the surgery...EXCEPT for the horrible spinal leak that made me feel debilitated! I have never had such a migraine and thrown up so much in my life! But the blood patch worked great. My question is, will I ever be able to sleep on my side where the pump is? Does anyone know if eventually I will be able to do this? Thank you for any help You are all in my prayers. God bless you!

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ev, Community Member
6/24/14 1:36pm

That Prialt is what my doctor wanted me to try but my insurance absolutely will not let me have it due to the expense. It is much cheaper to fill a pump with Dilaudid that it is Prialt. The only thing that concerned me was the side effect of having hallucinations. The insurance said i must try morphine before they would go to Prialt. I have been taking morphine by mouth for 5 years so my doctor wants me to start off with Dilaudid. Hopefully I can someday get the Prialt just simply due to the fact it is not a narcotic.

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By focus0725, Community Member— Last Modified: 06/24/14, First Published: 02/18/10