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Day 1 of Pain Pump Journey



  • Sandra!!!!

    I found you!! :). I had been looking for you in another thread where my thread is. Yeahhhh!! Glad you sent me a message. 

    Im SO GLAD the pump has helped. Just wait a little longer honey, the world will be a much softer place. 

    I was given a 3 month recovery time under very strict movement orders. We wanted this pump to properly anchor itself and the catheters also. Even though I got bored, I was all in. I did drive after about 2 months for very short trips I just had to get out!! I put a towel over where the seatbelt went straight over the incision, but after 2 months the surgical pain had decreased tremendously. I had staples in my abdominal incision over the pump and surgical glue over the catheter incision. I took pictures of my pump for about 3 weeks, wish I could post them here because the amount of swelling was so huge in my entire stomach and also how it looked with staples in it then after staple removal it looked Frankenstein-ish. 

    I wish a Fentanyl patch for you post-op would have never been ordered. I don't quite understand why it was, a long-acting method of a very strong medicine is not what usually is done after a pump, because they can't get a 'pure' reading on how the pump is relieving your pain. But glad to hear they are weaning you off it so you can really see what the pump is doing for you. 

    I also had the top of the pump under my ribs. It felt very very odd when I was home and anesthesia was wearing off. I thought at first is this really going to be okay?  But it's like the Anesthesiologist (my pain doctor) who has done hundreds of pumps knew it would 'settle in' the right spot and now I'm lying down & the pump is 'over' my ribs. Weird. 

    Isnt it so interestinh when they interrogate your pump?  When you hold the little round item and everything is printed out for you?  I've had mine for a year and one month and that still interests me so much!  It's so nice you received the larger model so you're refills are farther apart as mine is half the size as far as how much medication it will hold. This is a wonderful thing for you and I am truly truly happy that you now have it. How are you feeling??

    Please take care, take it very easy and send one of those clones of your hubby over my way. I'd need to send you a message to explain what I was going through personally during & after my pump surgery. But that's not important--I found your thread and will be following it now. (((Hugs))))

    @LTee43, im only posting here to you as this is the only place I've seen you. Just wanted to mention I understand you have Thoracic injuries/pathologies. I do too. That has been the biggest area of injury (after a rollover MVA) and all the damage. A pain pump can be used for thoracic pain. My doctor just put the catheters as high up as needed so the medication could drip down all of my thoracic spine. You can see my thoracic issues on the history area. 

    Sorry Sandra hope you don't mind but I'd seen LTee43 asking about Thoracic issues and wanted to say something. 

    May you have a tolerable pain day!!
    Gentle Hugs!!!
  • memerainboltmemerainbolt IndianaPosts: 6,443
    Nursesrangels, I do not mind at all you trying to help someone else through my discussion. I don't care how the help gets out there as long as it does.
    Thanks for finding me and so glad you commented.
    The neurosurgeon did not order the fentanyl patch, the nurses put it on because it was in my chart. Yep, my doctor was not happy. And it is causing problems now. 
    This is the update since Monday. I waited until today, as long as I could, to call my doctor back with another update.
    I am now in pain 24/7, an average of 6-7. Every four hours I get a bolus shot. By then I'm at a level 8-9. But the pain starts spiking about 30 min after the bolus where it was 2-3 hours.
    And i know it's all because of less fentanyl. But that's a good thing, I want a true reading of what the morphine can do on its own. But he doesn't want me hurting that bad for four more days so he told me to take the left over oxycodone from surgery. I go in Monday and we'll start over.
    I'm all in too, we both are. Funny, we had that discussion this morning. I was told again, by hubby, put the brakes on. Let's do it right. 
    The surgery pain is almost gone, a little jab once in a while. But, other than back pain, I do feel better. I was in really bad shape before surgery so I can tell a difference. Hubby is still trying to fatten me up, buys me chocolate milk and makes desserts at night to have with ice cream, he spoils me. And I'm so blessed!!
    Trust me, if I could clone him it would be a better world. 
    Message me anytime, I really don't mind. How have you been feeling?
    Take care and thank you. You were a big help when I was trying to absorb all of this information. You were always there answering all my many questions. 
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  • Nursesrangels, thanks for taking the time out to think of me. A drip down my thoracic area sounds delicious, I can feel the relief it would bring me. I don't care if I'm out of work for a while, I'll try to get it scheduled for the nice months so I can be outside. I have to discuss this option next month with my PM doctor. I've been too hurt for too long and I'm not nearly as bad off as many I see here. I don't see how some people exist day to day.
  • memerainboltmemerainbolt IndianaPosts: 6,443
    LTee, maybe this would give you the relief you need. As you said, I've been too hurt for too long.
    And that was my turning point in my decision, I had been in pain for so long and could not take it anymore.
    My surgery pain lasted about two weeks, but I had complications. You should be up and around in no time.
    But when you discuss this with you doctor have an understanding up front that he will help you find a comfortable level with the pump. Even if it means once a week of increasing until the two of you get it right.
    I have read where several people are having problems just seeing their doctors or them not wanting to do anything. That is just not right.
    Let us know if we can be of any help.
  • Hello everyone and I'm very happy I found this site/forum and this specific thread since I got my pump implanted last Nov 15/ 2017. Also, I used to have an SC stimulator but it wasn't doing much, so, it came out about two months before the pump went in. 
    I had an vehicle accident 10 1/2 years ago and have been dealing with pain management for a really long time and doctors have tried everything. I was tired of pills and I couldn't handle the stress any longer, having to be a slave to my watch and like many others have said before, there many of us that follow the doctors' recommendations and only you know how much pain you are going through. Some of the doctors have never been in your situation. I was the one asking (telling) the doctor what I wanted to be on. Many of the times, I asked to change (up/down) the dosage or medication. Remember that your body builds threshold and you are going to get to a point that your medications don't have any effects. That's why you have to go up and down. Same way people exercises and try to confuse the brain and muscles. 
    I could answer any questions anyone may have for any of this two devices. 
    I'll like to add that you have to be really careful about the trials. Remember, when you do these trials (in my case), take into consideration that you are not going to get the real results since you are not going to have your "normal" day to day activities. In other words, your doctor will inform you that you are to rest and concentrate on the trial results. 
    I'm really happy with my doctor but not too happy with some stuff about Medtronic. Have submitted few recommendations to correct and address several things on the manual and training for the staff. 
    Also, I received a box in the mail with two Evzio and a applicator trainer. I was told that I have to carry it with me in case of pump malfunction and OD on Morphine. I freaked out but over it. I downloaded the Medtronic App and have Medical Alert on my phone in case someone finds me past out. I have trained the wife, kids and some friends and the thing is "US Marine proofed". It has a recording with Voice Instructions. 

    @memerainbolt, I'm glad your are doing better and pray to God for a rapid recovery. Do you know that your remote control have an option to log your pain and could be enter at any time. Doctor or Medtronic Rep need to turn on this option. My Rep didn't even know about this option. It's on page 32 of your manual and they call it "Patient Diary".  I ordered the external antenna because I was having trouble with the remote and not getting the signal to the pump. Maybe because I wear few layers of clothes and a waist band. 

    I'm a US Marine Vet,  "medically retired" Federal Agent and I can help anyone with questions or concerns about my therapy. 

    Semper Fi and Honor First!!! 

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  • memerainboltmemerainbolt IndianaPosts: 6,443
    Obl0503, Welcome to Spine Health!!! But more than anything, thank you for your service. Two of my husband's brothers were Marines and we fly our flags proudly.
    Thank you for joining this thread, you have a lot of valuable information that will benefit anyone looking. There are also other threads started by other members on pumps where you might be able to offer advice also.
    I appreciate the advice about the patient diary but my PM doctor already has mine set up.
    I knew in the beginning that this was going to take time, patience and having some more pain. But we are in for good and willing to wait a little longer to do this right.
    Again, glad you are here, thanks.
  • @memerainbolt, it was my honor to proudly serve a country that received me with open arms. Now my county and extremely proud.... 15 years of government service, sadly and unfortunately cut short due to an "on duty" accident when I was in the BP  :(
    Glad to be alive (sometimes) and able to be productive of some kind to my family, kids and the country. I only ask God to give me enough time to put my last two through college, and if he wants, a little time with some grandkids. I know the last one is pushing it far. 

    I don't consider myself an expert but I'm available for any questions or advice. I did a lot of research on my own before WE took the decision. Yes, WE, because it is something that affects the family and love ones. They need to be involve and need to know what to do in case of an emergency. Please do your own research and remember that this is not for everyone. Also, "write write write" down everything that comes to mind (I'm a little forgetful) and ask the doctor or call Medtronic. I think they know me by my name at Medtronic since I have called few times, including to submit corrections to the manual. 
    As a matter of fact, I have to call them on Monday; last night, I found out that my remote control is not locked. By that, I mean that the doctor or one of the reps left open the section for programming the pump with the control. 
    Just like pills, you have to be really careful with the pump and treated the same way. My doctor told me that he had a patient who was extracting Morphine out of his pump. It take a special syringe to empty, refill the pump and this person was using a regular one. It caused infection, removal/ban of the pump program and Medtronic is the only company that has them. To me, at that point, you are an addict and not a patient, making it harder for a lot of us.
     For the males in the group: 
    You are going to be looking at the doctor with a weird face when he tells you that you have to wear a curset/girdle for not less than six months.... Then, your wife and kids are going to laugh at you when the see you. Lol :-) At least mine do......
    Remember, you are not a lone......

    Semper Fi and Honor First!

  • memerainboltmemerainbolt IndianaPosts: 6,443
    Obl0503, 15 years of government service, thank you again. 
    Yes, I agree on the We. My husband has been on this long journey with me, it's affected him as much as me. People might not realize the stress and heartache they feel as well, along with the tears and frustration. We've also kept our family along side for the discussions and decisions.
    I also write, I keep a very detailed log. On this forum I can't stress enough the importance of keeping a notebook with questions and concerns to take to your doctor appointments.
    Omg!! Someone must truly be an addict to extract their morphine out of their pump!!  Crazy!!
    Thank you for all of your information.

  • Obl0503 Thank you for your service!! 
    Like memerainbolt said "omg" that someone would take the Morphine out of the pump! It's compounded just for pumps and it is terrifying to think of injecting that intravenously!!! I'm glad your pump has helped you too, so that makes 5 I've read here on this forum that it's been a success for. 

    Sandra, sounds like you're getting ahold of your pump titration. I'd written above I'd had mine for a year and a month--oops it's been since May '15 so that makes it a year and 8 months. My patient Programmer is set for 2 bolus doses every 6 hours within a 24 hr period. That's not very many but it's okay for me. Some days I don't use it at all. Others--well I wish the boluses were closer together. I'll address that at my next fill. Since my pump started with Prialt, it was a totally different rate than now with Morphine. Morphine is definitely the med for my pump, at least for now. I've asked for probably 3-4 increases in pump dosage. He really makes small ones and my dosage is very low. But it WORKS!! Sitting here writing I've had zero pain. Yesterday was a different story, lots of pain, muscle spasms, etc. I take an oral muscle spasm med that does work. Zanaflex. 

    Im so glad to hear the pump has been beneficial for you. Remember how early on it's been, and this is for life (hopefully) aside from the change out when the battery dies. I call mine 'a miracle' and even though there are days that it's still hard and I pay for doing too much, I can do things I'd never be able to do before the pump. 

    Technology Rocks!!!

    (((gentle hugs))) :smiley:" alt=":smiley:" height="20" /> 
  • memerainboltmemerainbolt IndianaPosts: 6,443
    Nursesrangels, always so glad to hear from you, you are so positive and supportive. Thank you.
    I know this will take time and, thanks to you telling me this early on, I can deal with it. 
    Someday I only want to use the bolus when I have too. Which, I'm sure, will be when I start my yard work lol!!
    We go back in the morning to raise it a little more then see what happens. I'm fighting with my blood pressure and sweating, a lot, guessing coming off the fentanyl. But that's the only effects I've had from it.

    So, let's take suggestions here. We are already Spineys. What do we call our elite group that has pumps? 
    There are already pumpsters somewhere else, but we're special. What do y'all think?
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