Chronic Pain

Hi to anyone and everyone
i have been reading these files for over a week now whenever i get a chance and i am amazed at how many people are dealing with these issues. my biggest question of all is once you have the pump after the post op time, are you severly limited in what you can do? i just turned 40 and i am scared that my life is going to change dramatically once the procedure is done?

this website is very new to me so bare with me if i am seem lost (i am) I should have said that i am scheduled for the morphine pump on 3/10. my kids and family are anxious for me to get "healthy" just a few years ago i was a little league coach, the school nurse, and a sunday school teacher! now it seems to be very far behind me? I have CVID(common Variable immune disease) and so do both of my daughters. we receive a form of "cheml" every week and every 20 days - forever. we have been in treatment for almost 4 1/2 years. the treatment has helped keep us out of the hospital for the most part. i also have a port a cath in my chest - so, i will be setting off all kinds of metal detectors at the mall and not very fun to travel with. I have numerous fractures through out my body and have had osteomyelitis (bone infectionc) in both of my feet and legs. they question other areas as well. i have been on and off medication for pain for the last 10 years. i am sick of it!!! i know you all know how that feels. my children miss their active mother and i hate complaining about my pain. due to my diesease, i can not continue my work in the nursing field because someone with no immune system (CVID) really shouldn't be in a hospital environment. i am now working at a pharmacy and am a compounding specialist making medication! but, i am on my feet all day long. i am scared sooooo scared to do this and have prayed about it for months, i think i am making the right decision but still have some questions. do you ever get light headed or sleepy from the morphine pump or is the dowe so small that it doesnt effect you that way? i will continue to post many questions but i thought it would be best to give some background - am i doing this all wrong? let me know because i feel this site could be very valuable to me. thanks again for any input
god bless

Hi All,

Several recent posts have asked about what limitations in activities should be considered with the intrathecal pump. I had several spinal catheter failures which may have resulted from overly stretching my arm while on a ladder or just the fact that my spinal cord couldn't properly support the catheter. After several revisions, I had a neurosurgeon place a slightly thicker catheter higher up than normal. He may also have used some surgical glue at the entrance point.

The problem is that there is no way to support the spinal catheter from within the spine. A thicker catheter helps but if it is too stiff, it could break because it's less flexible. Placing it higher than the normal T11-12 level may also help as mine was raised to T6-7 and I've had no catheter problems for almost year now.

Some people resist the thought of having a gadget implanted in the abdomen but this is not as bad as it sounds. Moat of us have sufficient abdominal fat which hides the pump fairly well. The pump has some support clips to prevent it from moving around.

For most of us, realizing chronic pain relief without taking oral medications and suffering with their side effects is well worth the perceived negative aspects of the pump and its associated catheters. Compared to canes, walkers, crutches and other mechanical devices people must use, the pump is almost completely hidden other than a small protrusion in the belly which is barely noticeable unless one is a belly dancer which activity should be avoided anyway because of stress on the system.

I forgot to respond to Kelliann's question regarding whether the pump causes sleepiness. She is correct that the relatively small amount of medication in the pump compared to oral doses results in fewer side effects such as sleepiness. Oral analgesics must be metabolized by the body so higher doses are needed to result in effective pain control. The pump places the medication more directly to the area where the pain originates so only a fraction of the equivalent oral dose is necessary.

Actually, the medication travels up and down the spine in the sub-achronoid area.

Hi folks I have been looking thru some of the posts here a cpl of days now. I have a friend who is scheduled for the trial on 02/12/08. She is 50 Y.O. and has many of the same back problems I have seen here (DDD & Fibro) & is on many oral meds, along with 125mg. Fentynel patches. I saw the posts of a couple of ladies who are/were horse riders. That is our question. If the pump is put in what are your opinions on continuing to trail ride at the walk ONLY. We have very quiet & experienced horses. Currently her Dr. has said she can do whatever she can stand the pain of. She is able to ride in our pasture at the walk 10 or 15 min. a cpl of times a month. We will of course pose this question to her surgeon.

Hi Matt,

The Medtronic manual that's provided to the patient aftert he surgery mentions various activities to avoid along with other useful information. I suggest you call them at 1-800-328-0810 and ask for a copy of the Patient Manual. Indicate to them that you are having the pump installed and want to see the manual in advance. Your doctor might also have a copy.

Hello Bob,

I am very new to this site and am going for a morphine pump trial on 2-13-08. I have read many of your posts and appreciate all of your insight. I have had 2 surgeries for a ruptured disc and a spinal fusion this past April, all at L4-L5. I have been in a great deal of pain ever since the second surgery because the S1 nerve root membrane tore and I leaked spinal fluid. The membrane had to be patched and I have some atrophy of the right calf, numbness in both legs and feet, and pain that alternates from my hip to my feet, left to right, from one day to the next. The morphine pump is my last resort. I have severe constipation from the Kadian that I take and I am hoping that the stronger medicine through the pump at a lower dose will help alleviate the side affects of the constipation.

My greatest concerns with the pump is what I read in regard to your experiences: that the lead comes loose as you "reach for something while on a ladder" for example. I love to stretch, for example, and I feel that I won't be able to do that any more. I am willing to give that up for the benefits of the pump, but it sounds like day to day activities could make the lead come loose. Let me know if that is the case.

Also, what sort of activities did you do while going through your trial and how long did it take you to get your pump adjusted after it was implanted?

Thank you in advance for taking time to reply.

SoBlest

hi i'am new, to this group and i have not made any posting lateley. i'am going to OHSU for a diagose! my pain travels in me. and hit has been in my back alot. very painfull. how do they plant the morphine plant? and where at? i'am just trying to get more support groups for myself.have been in pain for a long time!

Hi Becky,

Rather than repeat a lot of the information that has already been posted here, I suggest you review all the threads from which you will find most of the information you may need. Also, visit the Medtronics website that has many details that you will be interested in. Go to http://www.medtronic.com/neuro/paintherapies/pain_treat...umps_prog_pumps.html. (You may have to copy and paste this long address into your browoser).

If you still have specific questions, please post them in this forum for a respnse.

Hi, all!

Hope all's well with everyone! I'm typing here from brrrr!!! Michigan (yep, we got the Artic Clipper - single digits :/)

Got the pump implanted on 2/5. I had a couple rough days - spiking temp of 101 on Thursday, and narrowly avoided going into the hospital (and giving my daughter another shot at driving on icy roads - her first was Wed when I came home - and she did GREAT! - she's ADHD w/developmental delays, so is still on permit, but I have no trouble thinking she'll be driving soon (she has to now - I can't for two weeks) - as soon as I can come up with bucks for her to take her test (Yep, stingy (and broke) Michigan requires you to use a private enterprise to road test!). I rested most of thurs and fri, went to a party on sat, and woke up virtually pain free sun. (you know you've been into computers too long when you realize you're using lower case for most words - that's the Unix way <G> - even my incisional pain (which ibuprofen helped) is diminished - YAY!!!! The only problem might come over 'turf'. My regular docs are at a hospital much closer to my home.

Anyone told that if they spike a fever over 102 (that's not related to the pump - like an infection - that it could be dangerous, because it could make the pump infuse a higher volume of meds, resulting in OD??? I tend to get pneumonias - at least 4-5/year. I PREFER to have my own docs treating me for the pneumonia, so would rather go to the closer hospital unless it was CLEAR the problem was pump related. I've got to check to make sure the closer in hospital could tweak the pump, or even refill it if necessary. Of course, the worst case would be pneumonia right around refill date. I'm hoping that they 'program' in a cushion - i.e., they give me a date a few weeks AHEAD of critical refill date so that if I DO get sick, I have a week or so wagon room - and most of my hospital stays are around 5-6 days for pneumonia. The biggest problem, of course, would be if the high fever could create the need to tweak the pump to a lower setting, then I'd have to go for ANY fever to the hospital where it was implanted.

Thanks!

Gina

Hope all's well here!

To add a little humor into our day...my daughter thought of this one. If my alarm should go off while we're out in a store, say...imagine a little kid pulling on mom's arm and asking "why is that lady's tummy beeping"? <LOL!>

Well, it'll be a week tomorrow since the inplant and each day is getting better. My temp went down and stayed down, and I called the hospital I usually go to to find out how to work it if I were to get sick just before pump refill date. Since that hospital does implant pumps (they referred me to another one - but only because my pain is NOT cancer), just not for non-malignant chronic pain, should I end up there for any reason not completely pump related, they'll refill my pump, if needed (or even tweak it).

That's good to know - I don't want to switch docs, not after having some bad experiences and having to hunt for the ones I have - and love - now!

Hmmmm...just looked at the temp out - a heat wave! It's 5 degrees! (it was 1 earlier), and tomorrow, supposed to get up to 30, but then will snow again ::sigh:: Hope everyone's keeping warm out there!

Hi! Need some Help.

I'm new to this site as well to the computer.I'm going to have the pain pump implanted. Dr. tells me I have to be off oral pain pills for at least 3 wks. I've been working on this for 3 months. I'm down to 15mg oxycodone 1 to 2 as needed but not more than 4 a day. Was on them and 80mg of oxycontin 3 x aday. I can't imagine being off pain pills compelety. As it is now, I have to be lying in bed with heat and ice most of the time. Do people have to be off compeletly. Thxs,Bill

This message has been edited. Last edited by: Bill,

Hi Bill,

I don't recall having to be "completeuly" off the oral meds before I had the pump installed but since the pump is designed to replace the oral meds, you would be overdosing if you continued your current level of oral meds and the pump was providing additional analgesia.

You are currently taking relatively high oral doses of narcotics and I think they want you to gradually reduce your medications so that the pump will take over completely. I no longer take any oral morphine but they did provide a prescription for "breakthrough" narcotics to be used when I do some activity that temporarily increases the chronic pain beyond what the pump can normally handle. I haven't needed to use these pills very often.

Your pain level must be fairly high and I know that reducing your oral meds will be very difficult but it will pay off when the pump is implanted and adjusted to provide full pain control without all of the unpleasant side effects you are currently experiencing.

There is no major post-surgical pain following the pump implantation so you could consider the pre-surgical discomfort as a replacement for what you normally would have to withstand after surgery. This may not make it any easier for you to withstand the suffering as you withdraw from the oral meds but you don't have to worry about more pain from the pump implantation surgery.

On the other hand, only those of us who have or have had chronic pain know how debilitating it can be so I wouldn't hesitate to be fairly firm with your pain specialist if you find that you cannot completely discontinue your oral meds prior to the pump implantation without major suffering. Try to work down to as a low as possible dose but it may be too difficult to totally discontinue your oral meds.

I wish you the best and suggest that you try to maintain a positive attitude knowing that the pump may provide great relief from your chronic pain and allow you to discontinue your oral meds.

Hi Bob

Thank you for your response, helpful to know.

Thank you, Bill

I haven't gotten my pump in yet, but I am one of the people who mentioned riding. Betty was the other. Part of the reason my docs want to get me on the pump is so that I can do my horse chores and ride again. As a horse owner you must know the imbedded risks of riding a horse, as in, anything can happen at any time on any horse. That said, I am going to try riding again, with the blessings of all three of my Docs. I will only be riding my old reliable Quarter horse pal, and leave the riding of my younger mare to my granddaughter until she (the horse) is way more solid than she is now. I am sure it is a risk, but I am equally sure that it will be well worth any risk for me, because it will do so much for me mentally. As I come to really be there, ready to try it this summer, I will be more than happy to keep you informed. If horses are in your blood, you will find a way, even if it's only driving with a cart. Hope this answers your question.... Linda

quote:

Originally posted by Bob Engelbardt:
Hi Matt,

The Medtronic manual that's provided to the patient aftert he surgery mentions various activities to avoid along with other useful information. I suggest you call them at 1-800-328-0810 and ask for a copy of the Patient Manual. Indicate to them that you are having the pump installed and want to see the manual in advance. Your doctor might also have a copy.