Chronic Pain

My doctor wants to implant the pump, but I too have never heard where you need to be off oral meds completely. Sounds crazy. Sounds impossible to me. 3 weeks---impossible, not even 3 days. I've read all 18 pages of posts here as well as other places and these posts assured me that I won't be having the pump. Had enough surgeries and been lied to too many times by surgeons. Not lied to but they are always overly optimistic. As far as riding horses, if you've read all these posts just on this forum, you'd understand that it would be next to impossible. Just getting on and off the horse could spell catheter problems. BUT, next winter, I may be desperate enough to go for the pump. The constipation is killing me. Drinking olive oil like its lemonade. Apple cider vinnegar and hot water, honey, flax seed oil, flax seed powder mixed in hot water. 3 to 4 qts of water. and then all the crapola food like 3 apples, baby carrots,etc Every damned day. Just the idea of being able to eat a hamburger causes me to rethink the pump.

Chet, I have been reading and occasionally contributing to this forum, and am the horse nut. The world is full of "next to impossible" things for those of us who are disabled to do in one way or another, and who continue to surprise others with the things they are able to accomplish. Ever heard of a mounting block? I admit that it will not be the riding I was able to do in the past, but the kind of riding Matt was referring to does seem possible to me. I will know for sure this summer, if summer ever comes to the UP. I am scheduled for my surgery on 3/5/08. As for oral meds, my Doc said not to worry about it. The injected med will replace the old ones, just as it did in the test. Good Morning all, Linda

Hi Chet,

I sympathize with your concerns but the one question I have is whether or not you've had your trial with the pump and whether it relieved your pain? If they are telling you to get off all of your meds before the trial, that would drive me nuts, too! On the other hand, if your oral meds are controlling the pain completely, how can the test determine if the pump will do it since you wouldn't really be in pain during the test.

The more reasonable approach would be to reduce your regular oral meds until you begin to have bad pain (unless you are already having bad pain even with the meds) prior to the trial. If you notice a marked reduction in pain, then the trial could be considered successful as the pump is helping to reduce your pain along with the oral meds.

If you decide to have the pump implanted, you may still have to take some oral meds for further pain control but the dose should be much less so that the nasty side effects will be reduced as the pump takes over some, if not all, of the pain control.

I hope you don't give up on the pump before the trial.

Good luck,
Bob

Can anyone tell me...most of my pain comes when I have to sit in an uncomfortable chair (which is any except my own) or walk or stand for any length of time. Can the user give an extra dose of medication when needed? It would seen crazy to have a continuous high level of medication in my body when I only need it a few hours a day.

Also, has anyone had a problem with itching?

Thanks!

that was a good question. Doesn't the pump get programmed to deliver various doses of medication during the day and night or am I wrong and I thought I read on a post 5 or 6 page earlier that there is a "button" for giving yourselve a "bolus" dose when needed.

I could have very good pain relief if I took 10 mg of methadone at noon(for the night time half-life help) and 15 mg oxycondone 3x a day or the methadone and 40 mg extended relief oxycodone once daily, either of those two combinations and I can be reasonably comfortable horizontal, but I can't because just taking half that amount causes the terrible constant constipation. Anyone have the pump installed who was taking this small amount of opiods, not really that small but compared to most on here. The pump really scares me. Had fusion L3 to S twice, first failed, hardware taken out both times (did nothing), fusion C4-C7 was successful. All this 3 to 6 years ago. Neck pain stinging bad now, no meds help neck pain, maybe because its too close to brain--haha. Have tried the stimulator trail---just another shocking pain. Will probably have to have the pump soon. Can't tolerate the bloating gut much longer. But the posts here really scare me as if I have not said that many times before.

I've ridden horses, great great animals and you talked about the part I was concerned about, the mounting and dismounting. I think just the riding would not be a problem. Keep us informed, all of you pain pump people. I need to make a decision in next few months I think.

PS PS PS I'd recommend not ever having the lumbar fusion hardware taken out. Everything I've read says it will not help and may cause more problems cuz of more nerve damage, and pain doctors I've talked to always ask me "why did you have the hardware taken out". They do not take it out 95% of the time. Many doctors and hospitals love to do surgery, even when unnecessary.

Chet.

The Medtronic pump does have an optional patient controlled programmer that he or she can use for a "bolus" dose of additional medication when needed. Of course, it has limit controls to prevent overdosing.

For some reason, my clinic does not provide this device and I wish they did.

Chet,

I'm not sure about horseback riding (haven't ridden much since I was kid, - last time was in 1999, riding horses in Rocky in CO!).

However, I have the pump in, and it's FANTASTIC! Yes, there is still pain, but this is only the 3rd week, and it's still being tweaked. It takes a while to get it tweaked to what YOU want the level to be because they go up slow - they start low, then go up, so you won't build up a tolerance.

There IS a device that you can have that will allow you to give yourself a bolus, but it's not commonly used, at least where I go, but it CAN be used if my situation calls for it. Since I don't work, my days aren't as structured, so it's hard for me to tell someone exactly when the pain hits the hardest (when I'm standing doing dishes, or vacuuming, etc., but I can't be specific about the time of day I do any of these now.) They can also program IN a bolus at a specific time that you tell 'em the pain is worse. I asked, and she said "sure, let's get the first thing first, though! - the initial tweaks to get the pain level down.

Chet, I hope this helps. All I know is that my pain has gone down around 75%, and even when the pain hits, it's no longer debilitating and no longer brings me to my knees wherein I cannot walk anymore as before. As I said above, I'm still in my 'infancy' with the pump, and still being tweaked - we haven't even TOUCHED bolus' yet!

Chet, I just wanted to let you know that where there is a will, there is a way. I am, with the blessings of all my Docs, getting this pump so that I will be able to do some of the things I have been unable to do since last summer.. like ride and take care of my animals. I have been disabled since 2002, but last summer the neuropathies screamed so loud I could no longer soldier on. Originally I had an accident with a horse I was training and well, the rest is history, as they say. I had my trial for the pump in January and I am getting it installed on 3/5. The trial went so well that both my Doc and I were crying. Most of my pain is caused by neuropathies and spasms related to them. I felt like a new person for about 6 hours when the med wore off. I can hardly wait until next week. My friend is going to the horse expo in Madison, WI and buying me a three step mounting block. I think it solves the saddling problem too. I am sure hopeful and will be sure to let those who are interested in riding know how it is going for me. I am not sure which vertebral area they are planning on to seat the catheter, but can see where stretching movements could be difficult. I intend to carry on, and one thing I have learned is that if I think before I try to do something, I can usually figure out a way this 60 year-old painiac can manage to do it. It sure seems to take a lot of planning to do some things that seem so simple. One thing for sure, pills, e-stim, massage, exercises, and months of rehab can't compare to the complete relief I felt during the trial. I think if the pump is 1/2 as good as the trial it is definitely the way to go.
Good Morning to all and sorry for my absence from the board for a while. Times have been tough with med changes and the flu. Thanks everyone for being there, and have the best day you can. Linda



QUOTE]Originally posted by chet:
that was a good question. Doesn't the pump get programmed to deliver various doses of medication during the day and night or am I wrong and I thought I read on a post 5 or 6 page earlier that there is a "button" for giving yourselve a "bolus" dose when needed.

I could have very good pain relief if I took 10 mg of methadone at noon(for the night time half-life help) and 15 mg oxycondone 3x a day or the methadone and 40 mg extended relief oxycodone once daily, either of those two combinations and I can be reasonably comfortable horizontal, but I can't because just taking half that amount causes the terrible constant constipation. Anyone have the pump installed who was taking this small amount of opiods, not really that small but compared to most on here. The pump really scares me. Had fusion L3 to S twice, first failed, hardware taken out both times (did nothing), fusion C4-C7 was successful. All this 3 to 6 years ago. Neck pain stinging bad now, no meds help neck pain, maybe because its too close to brain--haha. Have tried the stimulator trail---just another shocking pain. Will probably have to have the pump soon. Can't tolerate the bloating gut much longer. But the posts here really scare me as if I have not said that many times before.

I've ridden horses, great great animals and you talked about the part I was concerned about, the mounting and dismounting. I think just the riding would not be a problem. Keep us informed, all of you pain pump people. I need to make a decision in next few months I think.[/QUOTE]

I just have a general question for anyone to answer.
Has anyone heard any negative information recently about the intrathecal morphine pump? My sister had one implanted 6 years ago, and needs it replaced, but her primary care doctor is discouraging her from doing that. And I am wondering why? She still is in chronic pain, and he is encouraging her to stay with oral meds. But he won't say why he's afraid for her to have the pump re-done. Anyone?

Yooper and Beth:
I cannot understand why your doctor wants you to have the pump taken out and not replaced (assume the battery is gone), and then put you on oral meds. Have you been perfectly happy w/pump, are you taking anything orally at same time. Would like to know? Someone on this forum should have an answer for you.
I will have to have the pump trial next winter, don't want to go through it this summer, been in bed all winter as it is, so will ramp up orals meds when I want to do something this summer.
Yooper: do you believe you will be off oral meds completely? I am taking 5 mg biscodal laxative each evening, been doing that for about six weeks--longest stretch of laxitives for me. Will I be able to do that until January 09 when I have the trial without my colon completely stop working, i.e., will colon start working if trial and pump go well and not have to take oral meds. Anyone on this forum have constipation WITH the pump? Anyone taken biscodyl laxatives that long. Natural senna does not work, even 7 or 8 of them.
I can be comfortable in bed most of the day on 10 mg methadone and 20 mg extended release oxycodone. Doc says that small amount shouldn't be causing chronic constipation, but it does. And I eat everything I've read on internet that I should be eating/drinking w/no help. What I eat sucks. hamburger, whats a hamburger?

Chet
I don't know if I will be completely off oral meds, but I sure didn't need or want any during the 5-6 hour trial. I have requested the type of pump that I can give mtself a bolus so that I can use it according to what I am trying to do. Doc was agreeable. I have constipation problems with oral Dilaudid which is what I am taking. I am fortunate that senna works for me. Ever try hot peppers? They work for me, but I like hot food anyway.
I was pretty resistant to the idea of the pump,too, but now that I had the trial I can hardly wait. The constant rollercoaster with pills will be much alleviated. By rollercoaster I mean the taking the pill, waiting for it to work, the gradual wearing off, the agony of waiting for the dose time, and around it all goes again. This is one of the big advantages I can see with the pump....more consistant relief. Hope this was helpful. Linda

Hi All,

I just wanted to update you on my progressand add some comments LOL. It has been 9 months since the implant of my pump and I am just thrilled, finally. It took awhile to get my medication straightened out. I was given a personal therapy manager that allows me to get an extra boast of medication when I need it rather than just programming a time. This has helped greatly. I guess not all insurances will pay for it but mine did. Currently I only take my Lyrica, Soma and Cymbalta by pill form, along with the occasional oxycodine (about 2 5mg per day). This is much less than before.

As far as the trial, I was told not to take my medication the morning of the trial. I took my last pill around 2 am. I know what you are thinking but they really rushed through the admitting process and got me on the trial medication quickly. It was worth it to know that the new meds would take care of the pain.

As far as the question regard any bad news about the pump, my answer would be no! I have met people who are on their 4th and 5th pump and they still swear by it.

I hope this helps and I wish all continued success.

Hi all. I'm new here and unsure if I'm posting to a thread or one person. I'm writing for my dad. He 's contemplating the morphine pain pump implant. He has many concerns and questions and I think it would be helpful for him to connect to others who have had an implant, but he's not computer literate enough to use a site like this. Would anyone be willing to have a phone conversation with him? He lives in Northport, FL. 63 years old. Inoperable lower back issue w/ 2 ruptured and 2 bulging discs. He has taken oral Oxycodone (sp?) for the past 6 years and it's no longer working. From what I've read, most people find relief from their pumps, although some have had complications. I'd like the majority opinion here. His quality of life is horrible, and I think this is the last bastion of hope for him. Reply here if you're willing to talk to me/him and we can go from there. Thank you, thank you, thank you in advance. ~A concerned daughter wanting to help

Hi all,
I was just ckecking to see if my computer is broke. I have never seen this chat so quiet LOL. I hope that means that everyone is well and feeling fine. Was there a miraculas cure that nobody told me about? Seriously, I hope all is well.
cjs