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to pump or not to pump

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Old 06-22-2010, 06:07 PM   #1
Join Date: Jun 2010
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multiplepains43 HB User
Post to pump or not to pump

I've had back problems for 10+ yrs now. I've had a discectomy (L4/S1), I have 3 KESI's annually plus a cortisone shot annually. I'm on so many drugs it's ridiculous.,,.,,.from reading everyone posts I've tried them all (Fent patches from the 25mg to the largest they make....which wouldn't stay on), morphine, vicodine, demoral, I take OxyContin, Percocet, Soma, Gabitril (for the trembling since I have some permanent serve damage and shake like I have palsy), Topomax for migraines, Sonata for early morning awakening, Ambien for sleeping. (I've been on baclofen, tizanidine, amytriptaline (trippy), clonazepam, clonipin, the list goes on you name it).

I also suffer from severe GI problems, and was recently hospitalized for those. My pain Dr. has equated my GI problems with all the "pain" meds I'm on; and therefor wants to put me on the Meditrol Pain Pump. I have had so many surgeries (to go back to the last, after my diskectomy when they cut from breast bone to pubic bone to take out shattered disk and insert titanium disk..I had to go back in 5 months later due to an adhesion that had developed from the disk surgery. They had to cut along the same line they did for the disk, remove all adhesions that were cutting off my intestines (thank goodness they did NOT have to re-section) and close...however, the surgeon this time DID a MUCH better job closing. Also, since the surgery with my intestines, my immunity has never been the same. I get sick at the drop of a hat. I have no gall bladder, and had already had 5 feet of my instestines removed prior to disk surgery.

So, as you can see, I'm kind of shy about going under the knife again. I know the pump surgery is outpatient and refills are minimal pain, BUT, my question is.....DOES IT TRULY RELIEVE THE PAIN?

My husband of 15 years does NOT understand my pain. My psyiachtic nerve in my left side just kills me. When I get my SOMA refills, I want to OD so bad so I can get out of my pain. The Oxcy and Percocet give me so much energy, I can actually do laundry, cook, go out with my kids....but then I end up over-doing it and I'm down for 3 or 4 days in the bed on my heating pad. Both my husband and my mother want to commit me to drug rehab. They have both been to Pain Dr. Appts with me where they explain that they have me on a "CONTROLLED ADDICTION". My husband wants me off all drugs totally...I can't handle the pain now, I can't imagine what I would do without the meds. I'm only 43 and my life is shot! All he does is repeat "your quality of life this........that......" Like I don't know and I'm not upset about it.

For those that did go forward with the pain pump....are you sorry you did? would you do it again? why or why not?

Also, my Pain Mgmnt office requires that I come in for a 2-3 day trial only after a 3 day Psychiatric eval. did anyone else have this? Then, the told me it would 3-6 months before the surgery at the actual spine dr. could be done. then they would see me every 2 weeks for the first 2 months to acclamate me and the pump and to regulate the meds.

Any other suggestions? or is the pump truly THE LAST RESORT?

Thanks, in advance to anyone that help me out.

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Old 06-23-2010, 11:38 PM   #2
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ms_west HB User
Re: to pump or not to pump

As I sit and read your post, I am becoming choked up with tears and feel the need to just curl up in a corner and sob. I read and feel the desperation in your post. You see, I am 46, I have had 5 spinal surgeries fused from L3 to s/2 and even out of desperation for pain relief tried the spinal cord stimulator. As my track record would go, things went very wrong with the spinal cord stimulator and I now have a spinal cord injury @ T12. This injury was further complicated by CRPS/RSD and a injury to the sympathetic nerve system. Sound like we both have been thru the ringer.

Two months ago, I gathered up the courage and tried the pain pump trial. As things would go for me, trial one failed. Day 1 gave me some improvement and things looked hopeful then on Day 2/3, I became very sick with a severe headache and vomiting. My doc felt I was having a reaction to morphine which I can take orally just fine and was taking at that time. When they told me they had to terminate the trial, I began sobbing as I thought this was the end of the road. They assured me no they had a couple other cards up their sleeves and the following week we did trial 2. Trial 2 was dillaudid. Day 1 did nothing for my pain and on Day 2, my doc doubled my dose. Day 2 brought me so much relief that I was running thru the house singing at the top of the lungs. My children wanted to know who this lunatic lady was as they have little memories of the REAL me. Imagine my disappointment when I went into the drs office and he said well you passed now lets take it out. Take it out? What the heck? Lets implant the thing. My doc reassured me that he would get me in within the month to have the permanent one implanted and I began sobbing. To have relief and to have it suddenly taken away about caused me to lose it. My doc realized how very important this was to me and was able to fit me in within one week for the perm implant.

I am now almost 2 months out with the pain pump.

Old 06-24-2010, 12:02 AM   #3
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Re: to pump or not to pump

And to answer your question .....DOES IT TRULY RELIEVE THE PAIN?

You have to realize that implanting the pump and getting your meds exactly correct can take a very long time. At two months out, I am finally at a point that we are going to begin reducing my oral meds. At this point, I am on all my regular oral meds plus the pump meds. Our first job after surgery was to get my pain down from 9/10's to 4's. I am not all 4's but it is the closest I have been in years.

I have been told that this tweaking of meds can take anywhere from 6 months to a year. Some pm's will have you off all your oral meds by month 2 but my pm wanted to get my pain under control first so that I could begin living life. Now we are getting ready to reduce the orals and then increase the pump slowly.

Literally before my pain pump, I lived in my recliner. I slept in it, ate in it, and got up to do laundry/cook a quick meal with the help of my children. I was recliner bound you might say. PAIN RULED MY LIFE.

Now since the pump has been installed, I am starting to live again. We went on a mini vacation, I am doing gardening, I am cooking, I am going out to eat again, and I have even gone shopping.

Is there still pain? You bet there is. We need to remember that medication helps reduce the pain but it does not relieve the underlying disease/mechanical problem. As my pm told me, I am seeing that, I can do more with the pump but I am still going to have bad days from overdoing things. The key is I can now shop, go out to eat, and come home 5 hours later. Before I was back home within the hour and in misery.

For this extra pain, I will always need oral breakthru meds. I will never ever be 100% off oral meds.

You stated that "My husband of 15 years does NOT understand my pain." And I want to say I am so very sorry. My pm doc called us all in together first hubby and I then he brought the kiddo's in. In order for the pain pump to succeed in his eyes one must have the support of the family. In the last two months, I have been in to see my pm at least once a week the first month, the second month has been every other week, and we communicate via phone and email every couple of days. I am unable to drive so hubby has had to run me back and forth to all my long appts since we have no family in the area or really close friends I would feel comfortable asking for help.

Don't ever consider going off your meds for anyone else. You are the only one who truly knows what it is like to live trapped in this body 24/7. It sounds like you have a limited life as I have and you gotta do what you gotta do.

The best thing I could have done for myself is move forward with the pain pump. At two months out I have no regrets and I only have hope that someday I will be driving again and running my kids to the movies, taking them fishing, and going to disney.

To pull weeds and play in the pool with my kids has been so much fun the last month and I only look forward to more quality time with my kids. We have so much time to make up for the last few years that I have been home bound and we have been unable to live life to the fullest.

I did have a trial and it is important so that you know whether this will work for you or not.

I also did talk with a psych but to be honest, I had been chatting with one off and on since this chronic pain started so we already had a baseline and it was a piece of cake for him to whip out a letter stating that I did understand what the pain pump does, that I do have a family support, and that I understand I will never be 100% free of pain. To be honest, I would have been satisfied with a decrease of 20%. (Right now I have at least a 50% decrease in pain.)

I did not have to wait 3 to 6 months for the surgery as my pm doc did the actual implant himself and he realized how badly I needed it.

If you want details, don't hesitate to ask as I would love to help you out in anyway that I can as you seem to be at the same point of desperation that I life with cp 24/7 is hard and truly this was my last step as I had tried everything out there to find relief of my pain.

Lifting you up in prayer.


Last edited by ms_west; 06-24-2010 at 12:11 AM.

Old 06-26-2010, 11:25 AM   #4
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Re: to pump or not to pump

What a great thread. You have both given me a healthy dose of gratitude today. I have no where near the devastating days to get through that either of you do. I'm so sorry for your pain. I'm so glad to hear the pump has offered a better quality of life for you pepper and I hope the same will be forthcoming for multiplepain43 as well.

I see many situations where family is not supportive and can't understand what living with cp is like and that is so very sad. If only for one day they could experience it. Things would be so different huh??

Best of luck to you both and thanks for posting!


Old 06-27-2010, 09:01 AM   #5
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ms_west HB User
Re: to pump or not to pump

Thank you Bullymom! Multiplepains43, I am here for you!!

Old 07-07-2010, 06:25 PM   #6
Join Date: Jun 2010
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benbros HB User
Re: to pump or not to pump

thank you for that, my partner in pain 12yrs, had stimulator implanted 2yrs ago, pm now wants to implant pump, wer vnervous so great to hear it working for you n please God will continue to improve your life.
bless you and yours

Last edited by Administrator; 07-31-2010 at 12:18 PM.

Old 07-09-2010, 12:49 AM   #7
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ms_west HB User
Re: to pump or not to pump

Benbros best of luck to you and your partner! If you have any questions, please don't hesitate to ask. I will provide you with as much info as I can from a patients perspective.


Old 07-11-2010, 12:08 AM   #8
Join Date: Jul 2010
Posts: 5
RockOutRSDMom HB User
Re: to pump or not to pump

I am new to this board so hoping I am doing this right lol.
I have the pain pump (after trying the SCS) and would not change it for the world. I did not want to take all the pain pills that people with RSD end up taking. I did have to go in a lot right after it was put in to get it adjusted. Now I go once a month and it's a painless fill and right out the door. I still have brake through pain once in a while, RSD really does suck but I can walk now more than 15min.
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