Chronic Pain

Hello,

I am a 42 yo woman dealing with chronic back pain for the past 6 years. I've had 3 back surgeries and am still in terrible chronic pain made worse by any type of activity or loading (sitting, standing, bending). The doctors have reached their wits end and have nothing more to offer than the morphine pump. The quality of life is so poor that I see no other option but I have some serious concerns about the pump, in terms of how it will feel, look, and work. I feel that I don't have much of a choice and will have to give it a try soon, but the thought brings me to tears. I've lost so much in the past 6 years and don't want to hope for too much lest I be disappointed. Here are my main questions:

1. I used to be an avid tennis player and downhil skier. I assume the tennis is out, but can I never ski again because of the risk of a fall and potentially breaking the pump?
2. The oral meds I am on (90 mg methadone/day) have killed all sexual pleasure. Have any women experienced this and did you recover this after getting the pump?
3. What about every wearing a bathing suit again? Won't the pump stick out?
4. It is hard to get used to sleeping and lying down in a comfortable position with the pump? Do you always notice it is there?
5. I have heard that there is a control that allows the patient to self-administer bolus meds using the pump when they need them. Does anyone have this device? I fear that I won't be able to increase my meds when I need them the most, such as after sitting for a long period of time.

Basically, any advice would be welcome, but I am especially interested in hearing from other women who are using the pump. Thanks to anyone who can help!

Dear Newlife,

I share your frustrations. Please read my profile so that you no a little bit about me. I almost went through a morphine pump trial but decided that the risks were too great for the reason that I was going for it...severe constipation from my oral meds. I can't offer many answers to your questions but please read the many posts from Bob Englebardt. Go to General Discussion first and then look down the list. You will find his name under "Willing to share experience with intrathecal pump". You may find some answers there.

As for me, I have 2 surgeries and a spinal fusion for a disc that ruptured twice. I take 90mg of Kadian (sustained morphine) during the day and 60mg at night. I also take ultram and the max. dose of topamax. I totally understand the sexual side effects that you state. My desire is not gone but my ability to climax can be quite difficult at times. I don't know how this would have been affected by the pump since I didn't get one, of course. I was told that I would be given dilaudid, which is stronger than what I am taking, but in smaller amounts. My side effects would be less supposedly. Until I actually had it, there would be no way of knowing how it would affect my libido.

I would think that you could still play some tennis. You would probably have to watch how much you stretch your arms out though. I have read that some people have literally had their lead come out just by reaching for something from a shelf!!! I love to stretch and it gives me great relief sometimes. That was one reason why I didn't get the pump because I can't imagine never being able to stretch again. These are questions that you need to ask your pain specialist.

It depends upon where they put the part that holds the medicine, as far as whether or not it shows. I have been told that there are 2 possible placements: in the lower abdomen or just under one of the breasts. The abdomen is more common. If you have less fat in you abdomen, the more it may show. If you are like me, that's not a problem! Ha! I would have had it placed in my abdomen and there would have been a scar there, one on my side, and another on my back. Since I have already had 3 back surgeries, my back looks like a road map anyway so a one piece bathing suit is for me. Unless you are as skinny as a rail, yes, you can wear a bathing suit to my knowledge.

With me not having a pump, I can't tell you what it's like to sleep with one. People that I have talked to though haven't mentioned issues with that. It is all internal...nothing is outside of your body after the trial. The biggy is getting used to it. You have to go back every 2 weeks to adjust the medicine.

I don't know anything about your 5th question that you bring up. Sorry! I hope that some of what I say helps though. If anything, at least I share your frustration and will keep you in my thoughts and prayers. This website will give you so much support and information. Keep searching and contacting people. It was a true Godsend for me in my decision about the pump. For some, it is a miracle. For others it is not. You have to gain knowledge and decide what is best for you. I will pray that you find comfort and peace not only physically, but also with the decision that you make as to whether you get the pump or not.

Forever in His Grace,
SoBlest

Hi SoBlest,

I thank you for sharing your experience even though you've opted against the pump. I have been reading the other posts re. people who have had the pump, and they've been helpful to an extent. I do think, though, that the body issues are different for men and women and haven't seen too many comments from women about how this whole experiences affects how they feel about their body, etc. So I am looking for that.

Constipation is a huge problem for me as well. I have to use tons of senna-s along with both a suppository and an enema to have a bowel movement and have tried every medication under the sun to help. I am extremely sensitive to the effects of opiates and have been having this problem even when taking lower doses. So I am hoping that the pump will get me back to "normal" in this respect as well.

The worst thing for me is, of course, the horrible constant pain. There are no good days. Just bad days and nightmares. I am fortunate in that I am able to work at home in a recliner and make a good living even though I can do little else aside from the occasional brief outing and a 30 minute walk filled with pain. I feel like I have no life so the decision to get the pump is not difficult from that respect, but I am struggling psychologically to adjust to having this foreign body in me. I'm not super skinny or a big person-somewhere in between, so I know the pump won't be hugely obvious, but I've seem it and can't see how it would not show through a bathing suit. Ah well, if it allows me to do other things, I guess I could handle that limitation.

I totally agree about the scars! I have two on my back and one on my lower abdomen from prior surgeries. What's a few more at this point?

I'll let you know what happens, in either case, as I am pretty sure that I will get a pump in the next few months.

(still searching for my) NewLife

Newlife?

I had a pump implanted on 2/5, and I'm very happy with it. I'm also a bit 'plump' around the waist now due to prednisone (I have COPD from smoking for 33 years), so now my right side sticks out even with the left (where the pump is) <G>

I was in so much pain that even if the pump stuck out, I wouldn't be terribly concerned...the pain relief would be worth it!
I'm also single now (been so since 1988, when hubby was killed) and since I don't believe in 1 night stands, and haven't found the right guy yet, I can't speak for sexual effects, but I DO know that constipation is NOT one of the problems! I'm less constipated now than I was on either oral morphine, fentanyl patch and either Lortab or Dilaudad.

Yes they warn you about reaching and so on after you get the pump, but the major part of that is in the 1st six weeks. Go to www.medtronic.com and take a look at that site. That'll give you a real insite into what you can and cannot do after the pump is implanted (btw, a kind of funny, if you are giving your history to an ER doc, and they're foreign, don't say 'implanted' - I did, and it came out in my discharge summary (yep, hospital for COPD exacerbation) was 'infected' <G>

As for sleeping with a pump, no big deal. I sleep on my right side, so it's on my left (which I'm glad of, 'cause I have a problematic ureter (tube between kidney and bladder) on the right that needs watching as well as stones in the right kidney.

As for a self-control, yes, there is - it was just approved by the FDA. My clinic will give it only in 'special' conditions, and I'm trying to prove I'm one of 'em - I don't work (well, I do do web design at home), so my day is irregular to say the least, therefore I can't tell what time of day I'll be doing something that would cause extra pain, since some days I do vacuuming at 3 p.m., and some days at 10 a.m., and standing to wash dishes could be anytime(s) during the day...but so far...well, it's only ben six weeks, and there's a LOT of tweaking still to be done. We're still on the initial upping the continual dose. There are various meds that can be used, either singly or in combination, the pump can be programmed to give a bolus several times a day, - we've just 'scratched the surface' as it were.

Hope this helps!

My advice is DON'T. I had a pump put in 8 months ago and I can't wait to get rid of it.
It is SO hard and I have bruising coming from inside.I have had to buy a size larger in clothes to accomodate it. Sleeping is o.k if you are a right side or back sleeper.It sticks out and makes me look lop-sided. Very weird and it maked me feel like a freak.

I have proved to be just as allergic to all the meds in pump as I was to them orally, despite all Drs predictions.

The Drs only tell you the GOOD things about anything, never the problems. One had to find those out by experience.

Mag1