Chronic Pain

i strongly suggest that that all of you with the morphine in you never get it taken out i just had mine taken out because i was having problems with it. the day after i got it out i seriously thought i was on mars because of the strong withdraw symptoms i could not even reconize my own son now i am going on day 6 i i still fell the effects and it feels like on just did a pound of meth so thuink about it if the or you ever say or ask you if you want it out

Hi Josh,

I've had several failures in the past caused by catheter slippage and now have another problem that's causing withdrawal symptoms so I can sympathize with you.

My suggestion is to always have some oral morphine available to take over when the pump system fails or is removed. You can then try to gradually reduce the oral dose if you are no longer going to take morphine in any form. If you suddenly stop the morphine, you get the withdrawal symptoms which can be very unpleasant.

I'm wondering why you had the pump removed? Was it not effective?

i had the morphine pump remove because for the year i had it in i started to fir an allegeric reaction to morphine so when i got it removed i could not even take oral morphine the doctor had said

quote:

Originally posted by josh:
i had the morphine pump remove because for the year i had it in i started to fir an allegeric reaction to morphine so when i got it removed i could not even take oral morphine the doctor had said

Josh: I think your post was only partially completed. In any case, I'm sorry to hear that you have developed an allergy to morphine. I'm surprised, however, that your physician didn't try one of several other analgesic medications that can be used in the pump but perhaps he felt that you might exhibit similar allergic reactions with other opioid medications using the pump for delivery.

I assume you are back on oral medication and I hope you are getting some relief from these. They can be quite effective but may have more side effects compared to the pump because of the higher dosage required. Most of these side effects can be managed.

Best wishes, Bob

Wow...Bob, It's so cool to read so much info on the pump. I only wish that I would have read it last month before having it put in. It does this nurses heart good to know that there are some people out there who take time to learn all that they can about their illness. As I mentioned,I had my pump placed one month ago and although I occasionally have back pain,the majority of my pain is in my chest (breast bone and ribs) as well as my hips and arms from a disorder that my pain specialist calls Conective Tissue Disorder. Which basically means that I have weird pain which does not respond well to the usual treatments. Due to my work as a nurse I was having a problem with taking oral or transdermal opioids. I asked my doc about having the pump and he felt like it would be a good choice for me so after fighting with my insurance over the cost of the pump (55,000) and the procedure itself another 5-10,000 including the trial, I had it placed. I am happy with it overall but I did have a problem with a "seroma" which is just a collection of fluid between the pump and my abdominal wall. But that has just about gone away. Warning: Wear the back brace/abdominal binder that they put on you during surgury until the doc tells you to stop. My chest and hip pain is so much better but like your knee pain my arms seem uneffected by the medication. The one thing I'd like to tell you is this: Bob, you have got to get you one of these handheld bolus managers. I was afraid to use it at first but the pain got so bad that I had to. I was surprized that it worked so well. But while you are waiting for your clinic to get them...Keep singing the praises of this pump and giving support to those out there who can't find the right kind of info. Afterall, the doctors and scientists who write whats available don't know what real pain. Well, I gotta hit that button and gets some sleep...

Hi Kelly,

Glad to hear that you are getting some pain control from the pump even though it won't handle all of your problems.

Unfortunately, after singing the praises of the pump which I've had for about 1 1/2 years now, I'm still having some problems. I experienced withdrawal symptoms one night last week but an X-ray showed the spinal catheter still in place. I've had three previous failures with the spinal catheter slipping out but the last surgeon placed it higher up and used surgical glue to provide better support where it enters the spine.

Unfortunately, regular X-rays cannot clearly indicate the position and state of entire feed catheter so there could be a kink which can cause temporary interruption of the medication flow. This could be the reason for the withdrawal problems I had last week. The doctor said it could also be caused by an air bubble.

As I previously posted, it's important, in my opinion, to have some immediate-release oral morphine handy to take as soon as withdrawal symptoms are felt in order to lessen the nausea and other unpleasant feelings that may develop when the body is suddenly deprived of morphine even with the small dosage provided by the pump.

If one accidentally overdoses on the oral morphine, he or she will become very drowsy but this, to me, is much easier to withstand than the withdrawal symptoms, especially the nausea. It's also good to keep on hand some over-the-counter anti-nausea medicine to help alleviate the unpleasantness if the withdrawal cannot be forestalled.

Of course, I hope you never have any problems with your pump system but it's good to be prepared anyway.

Aloha,
Bob

Bob, I am going to have my pump refilled next week for the first time...I was wondering how painful it is to have it filled. About how often do you have to have yours filled? I know that you don't yet have the patient manager for bolus doses (again you have GOT to get you one)but just for the sake of my own education, I'd like to know.

By the way Josh...How are you feeling? I am Praying that you are doing better. I hope that your docs have found something to ease the pain.

Hi Kelly,

The refill is painless and takes only a few minutes. They numb the area and insert a syringe into a self-sealing port at the center of the pump. You probably won't feel a thing and there's nothing to worry about at all.

I'd sure like to get the bolus device but my clinic doesn't supply them. I asked about it and they said no. Not much I can do about it.

Well Bob, As usual you were right. It was painless to have it refilled. By the way, I mentioned to the nurse who filled my pump that I was surprized that the Bolus Manager was not available in some areas. She said that when she went to an inservice in California, She was only one of two people who had worked with the device. She said that instead of the Bolus Manager most clinics set the "Complex" rate as I think that you mentioned at one time, the pump can be set to go at a higher rate during certain times of the day or night identified by the doctor and patient. Which is good because you wouldn't have to wake up to hit the button it would just activate on it's own. She did say that you could not have the Bolus manager and complex settings at the same time. So, If I wanted to have mine set to go up in dosage in the early hours of the morning, I'd have to give up the ability to give an extra dose every 4 hours PRN (Patient Requests Needed). I also asked about having an emergency dosage of Morphine on hand in case of an emergency as you had said. She told me that should something go wrong with either the pump or the catheter, I should call my doctor who would have me either go to the ER or his office and they would take care of it at the time. Of course I live 10 min away from both but if someone was say homebound or lived far from medical assistance I agree they shoud have at least one emergency dose available.
I invited them to get online and read the thoughts and experiences of you, Josh and the others. It's an education in itself to see what people who have really been through it have to say honestly.
Thanx again for all you help and support.

Hi Kelly,

Thanks for the information. You've educated me on something that I didn't know concerning the automatic bolus setting vs. the patient controlled device. My pump is set to provide a little more medication in the early morning before I awaken but it doesn't seem to have much effect. So far, I don't think I have a need for the device since I've been prescribed oral hydrocodone medication for breakthrough pain up to two doses per day which usually works fine.

As for having oral medication handy in case of pump system failure, I was told that such failures are quite rare so the doctors would rather be called instead of having the patient handle it. Because oral morphine takes some time before it works compared to an injection, it would probably be better to have the emergency room personnel handle giving a morphine injection to alleviate withdrawal symptoms should they occur. The amount to be injected should be determined by the pain physician to avoid overdosing.

I suggest, however, having anti-nausea medicine available at home since this can be one of the more unpleasant symptoms of withdrawal. You can purchase this over-the-counter at most pharmacies and it can be taken in frequent doses to reduce the nausea so you can get to the emergency room in more comfort. It's important to carry the Medtronic patient information card with you so that emergency room personnel, who may not me familiar with intrathecal morphine pumps, can contact them for details.

Chances are that you won't have any problems that cause withdrawal. I'm so glad to hear that you are doing well and that the refill was painless and quick.

I do have a rather funny story concerning my last refill. The procedure is usually performed by a trained nurse practitioner but this time the physician did it. He's generally all business and rarely jokes or makes small talk. Here in Hawaii, many of us wear shorts and slippers and I had to leave the car to get something from the house and forgot to put on my slippers before getting back into the car. My wife was driving me and I arrived at his office barefoot as there was no time to buy new slippers without being late for my appointment. The straight-faced doctor looked at me and said, "Well, no shoes, no shirt, no service!". Fortunately, I did have a shirt on so he proceeded to fill the pump despite my bare feet sticking out at the end of the table. I was happy to learn that he does have a sense of humor.

Aloha,
Bob

Hello to All
I would first off like to thank all those willing to share their experiences and add a special thanks to Bob for starting, sharing and keeping this going. Although I have yet to post a comment I have been reading this forum for several months now. You have all given me much hope and encouragement just knowing that I am not alone. My reasons for not posting up until now are that I have just have not felt well enough most of the time and the other is that I have yet to receive the relief that most of you have had from my pain pump. I have had mine for almost two years now and am seriously considering having it removed. At the same time I hope not to discourage anyone from trying it.
I shall try to give a little background into my experience before I get started with the many questions that I have for you all.
My name is Mike, I shall refer to myself as Mike From Oregon due to the fact that there is another Mike in the forum already. I am a 41 year old ex-construction worker injured on the job in the summer of 2002. At that time I herniated a disk at C-6 which was causing compression and stenosis requiring immediate fusion surgery at levels C-5,6,7
After the surgery the pain increased and the surgery was some time latter deemed failed. After spending the next few years going thru the oral opiates, fentinol patches, pain therapy, acupuncture, electrical pain stimulators, etc. I found myself having the morphine pain pump trail in late summer of 2005. At that time I was actually doing better than I had up to that point with the acupuncture, I was able to lower my oxy intake to about 60 to 100 mg per day. I had at times been on double that amount of morphine, with very little relief most of the time.
In any case upon having the pain pump trial I was shocked at how much relief that it gave me… but it has since yet to offer me anything close to the relief that I received during the trail. After having the pain pump installed in the fall of 2005 I have had nothing but problems. The fact is that I was much better off before I had it put in, at this point anyway!!!
Like you Bob I had the same initial problems with the catheter slipping out twice. Some of my other minor problems have been flue like symptoms at each turn up, along with extreme fatigue. So bad that I have yet to reach over 0.3 MG per day, not to mention the nausea constipation and the other stuff that adds up to just making me feel like crap most of the time. One of the main side effects that I have had is low testosterone levels. Which I am finally being treated for!! I am about 80% bed ridden at this time and it feels as though my body is just getting weaker and weaker. Before the pump I was about half that on my bad days.
Now I am not saying that this thing does not work on the pain, that has not really been my issue with it. It seems to work on some of my main pain problems but it does not help at all with my break thru pain. I am now having to double my oral pain meds 100 to 200 MG per day of oxy just to slow down flare ups. It seems to me that my testosterone level has actually somehow increased my pain level. At the same time I’m not really sure and it has been difficult to get any real answers from anybody in regards to these problems. I feel as though my pain Doc is the only one that has any real knowledge of this stuff but he is often too busy to contend with most of my problems. He often refers me to my primary Doc or to his staff whom are all great at turning it up or doing refills but suck at knowing much more than what they specialize at or were trained to do.
Another problem that I have had with the team of people that I have working on me is that they do not seem to talk to each other or no much about what the other is doing. It took almost a year to find that I had low testosterone and then another six months to get into a endocrinologist to be treated. I guess that expecting your pain doc to over see any outside resources is just too much to ask. Anybody else have this problem?
Now to continue my main my questions…..

Anybody with any knowledge of similar experiences or that has experienced any similar side effects, especially in regards to low testosterone caused by intrathecal or oral use of morphine’s would be much appreciated??????

Another question is to you Bob; In your reply to Tom on 4/16/07 You mention having fatigue due to thyroid problems, I am curious as to weather this is a side effect of the pain pump or just a routine medical condition. Also how did you come to know about this problem and has it since been resolved, and if so how???????

This one is for Josh posted on 6/9/2007 I am very curious to know any details that you can share with us in regards to any of your situation. Especially about the side effects that lead to you having to remove your pump within the first year, also why they didn’t try another medication, as Bob asked?

Last, would be the same question to anybody else that has had similar problems or that has had to have a pain pump removed. Any information would be greatly appreciated???

I would like to say again to anybody thinking about doing this that they should use their own judgment and that I would encourage anybody with chronic back or neck pain to at least go thru the trial. We all have different experiences and to not take a chance on living pain free would be silly. I am still not sure that I will remove my pump yet, I just hope to learn as much as I can from others that have been thru this.
Again I would like to thank everybody and anybody for any comments that they may have in advance. If I do not get back to you right away, I will at some point. Please be patient with me! I will keep in touch and I will try to share as much as I can, when I can, as soon as I can.
Thanks Again

Mike From Oregon

Bob how do I remove my last name from my post???
Mike From Oregon

Sorry Mike, I really don't know how to do that.

Aloha,
Bob

Hi Mike,

I think I figured out how to do that. Press the "Go" button at the top of the forum page, select Personal Zone and then Profile. Press the "View/Edit link and then scroll down to Display Name where you can change how you want to be listed. I think this will work OK for you.

Aloha,
Bob