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Pain pump

Hi all! I just joined. I've had chronic pain  since I was 18 and a cat scratch became septic and I lost a kidney. Ever since then, I haven't been the same. Now, 40+ surgeries and 36 years later I live my life in pain. Started going to a pain clinic per my rheumatologist. I'm currently on 12 mg of  Hydromorphone ER and Dilaudid 4 mg.  I'm in the process of getting the pain pump. The Dr said I'm at the top of the pain meds an soon I won't get any relief. That scares me. 

I think I've seen on here a few  people who have the pump. Can you tell me how the surgery  went and how you're feeling with it in you. That part bothers me. I would be getting Dilaudid in the pump and a numbing med. I'm praying it works out. I'm scared. But, can't go on like I am.

Thank you

Diane

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Comments

  • LizLiz Posts: 2,075

    Welcome  luv2napp, we’re glad you’re here!

    While you’re waiting for a reply to your first post, please take a few moments to review the Code of Conduct and FAQ section, located under Forum Tools. There you will find important information about posting in the forum and helpful tips for new members.

    Have you read through our Chronic Pain Resources on Spine-health? You’ll find a number of valuable Chronic Pain Coping Techniques and resources for Understanding Neuropathy Symptoms. It’s a comprehensive resource for those seeking more information about chronic pain. I hope you find these resources helpful.

    Again, welcome to the Veritas Health Forum.

    Liz

    Veritas Health Forum Moderator

  • I was hoping to get more answers. There are others on here who have the pump, right? I saw the surgeon on Tuesday. He seems very knowledge and that this is the right move for me. I currently on 4 mg of Dilaudid IR 3x day. And Hydromorphone ER 12MG. The Dr said I'm taking the big boys and is getting close to the point that they will not be able to treat my pain if something terrible would happen.

    It's possible I could get the pump after Christmas. Any insight would be appreciated .

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  • Give it time, we have a few members that have pain pumps, we also have a moderator that has one, I will message her so she can respond, check in tomorrow.

    Chip

  • Thank you so much! 

  • memerainboltmemerainbolt IndianaPosts: 4,167

    luv2napp

    Welcome to the forum. I have had a pain pump since Jan. 2017 and really changed my life. Like you, I was on so much medication and to the point of it not working anymore. I have scoliosis and ruptured and herniated disc from L1 to L6. The disc are being held together by a rod, cages and 8 large screws from a previous surgery. I am not a candidate for surgery.

    Surgery for the pump went well, they make a pocket out of fat to put it in, usually right under your belt line. I could not bend or twist for 6 weeks but I still don't. I am very tiny so mine is visible if I wear something tight. Other than that, most of the time I don't even know it is there. Mine if filled with morphine and in Jan. we will be adding a numbing agent to help out.

    Everyone is different, their meds and their doses. It took a while to get my doses up to where I was comfortable. I have a very good PM doctor that is good to work with. I would ask a lot of questions, like how often can I get the dose raised, what other meds are available if these do not work. There is really nothing to be scared of, especially if you are in this much pain. 

    Feel free to contact me if you need any more information. Good luck and please keep us posted when you have surgery.
    Sandra
    Veritas Health Forum Moderator

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  • you sound just like me. I wish they would put the pain med in right  away instead of waiting two weeks.  Then on that 16,, I see the ortho for a second opinion on my knee.

  • memerainboltmemerainbolt IndianaPosts: 4,167

    Good luck with your knee, keep us posted on how you are doing.
    Sandra

  • Thank you, Sandra.  I'm a nervous wreck thinking about going through this surgery and then having to deal with my knee revision AGAIN. My husband doesn't understand why I'm nervous, as I've been through so much worse. I think it's just being exhausted, every year it's one or two surgeries. And being in constant pain. I just come up for air and wham another thing happens.

    You say you are happy with the pain pump. You seem to be the only one.  How long did it take to regulate the meds to your comfort? And can you also get oral meds if needed?  They are using Dilaudid for sure and a numbing med, I think. But I have to wait two weeks. And two weeks after my surgery, I'm seeing the Dr for my knee. It's going to be a hard start to the year. 

    I keep thinking about having that inside of me, but remember that I have a fake knee and a fake hand knuckle. So, I should be used to it.


  • memerainboltmemerainbolt IndianaPosts: 4,167

    All of your questions above will depend on your doctor. It took a while to get mine regulated because my PM doctor would not raise it that much each time. Using morphine you have to be careful with granulomas forming at the catheter. You don't have to worry about that with Dilaudid. I am having butacaine (numbing agent added in Jan. to my refill. I do not have oral meds but I do have a small remote device called a PTM, personal therapy manager, where I can give myself extra doses every 2 hrs.

    I am still in pain but most of it is from other issues not covered by the pump. The pump only covers the spine. 
    Sandra

  • I was told the pump helps with all over body pain that RA causes. Constant tingling in my limbs. And it will allow me to get off pain meds. I know it won't help with my knee. 

    Now, I'm really starting to question this move. 

  • memerainboltmemerainbolt IndianaPosts: 4,167

    My catheter is at T1. My surgeon put it that high to cover all of my spine and it is what is called interthecal, The meds flow in the canal and stays in your spine. I am off of everything except Neurontin ad Robaxin for muscle spasm. I have Osteo in my spine so the pump helps there. I also have RA, mostly in my hands and feet, which the pump does not help.

    I am just telling you what my doctors have told me and what I go through. I cannot imagine what kind of pain I would be in without it. I came to Spine Health 3 yrs. ago looking for answers on a pain pump, just like you. I took the information, did my research and started asking the doctors more questions. They might tell you certain things but always ask what happens if it doesn't. And that is what I would do before you decided, ask more questions.

  • Thank you for your honest answers. I appreciate you taking the time. 

    I did the trial and it worked for that tingling that I have all over.  It's constantly pulsating. It took away that pain in two hours. And the pain came back in two hours after taking the catheter out. I'm sure I'll have some pain with my RA, but I need to remember WHY my pain Dr suggested the pump. I need to get off these high doses of pain meds. And I need to do it before my next knee surgery or my pain won't be controlled. It's just hard because I have too many issues and it's  hard to focus.

  • Merry Christmas to all. I'm scheduled for my pain pump surgery on Jan 2nd. I'm still very nervous! I was trying to get it done before the end of the year so it would be free, but it hasn't happened. Got on the cancellation list, though. If it's the 2nd, I'll meet my catastrophic out of pocket max the second day of the year. Crazy!

    I had to jump through more hoops for this than any other surgery ever. 


  • Hopefully there will someone will cancel, but if they don't you will have a full year of your deductible met.

    Chip

  • memerainboltmemerainbolt IndianaPosts: 4,167

    Good luck on your surgery! Please keep us updated after surgery on how you are recovering.

    Sandra

  • Challenger, you are right. I need to look at the bright side. It's still on for the 2nd. I'm a nervous wreck for some reason. I've had so many surgeries, yet this one bothers me. I wish they would keep me overnight for the pain relief, but the surgeon feels the pain won't be too bad, but he forgets I have had many abdominal surgeries, so there's quite a bit of scar tissue to get through. 


    Oh well. Wish me luck! 

  • Thanks, mmemerainbolt. I'll touch base afterwards. 

  • I hope everything goes well with the surgery and recovery

    Chip

  • I do have a concern/question. I've seen videos of people who have gotten the pump and some stay a day or two in the hosp and some go home the day of. I want to stay in for a day to get pain management. I don't think oral meds well help. But, my surgeon refuses. I wad told by my phychologist that legally they can't make me go home unless I feel  ready. I don't like when doctors don't listen to me. Did you all go home the day of? And was it painful?

  • memerainboltmemerainbolt IndianaPosts: 4,167

    My pump was not filled with morphine after surgery. I had to go to my PM doctor to have that done about 2 weeks after surgery. Talk to your PM doctor and your surgeon about when they fill it. I had to be on oral meds until it was filled. 

  • They aren't filling mine until two weeks after, either. I have my appt set with my PM Dr 2 weeks out. He said I'd be coming back quite often to get it regulated. Then every three months after that. 

    Did you stay over after surgery or was it outpatient?

  • memerainboltmemerainbolt IndianaPosts: 4,167

    My surgeon had told me I would go home the next day. But I had a lot of complications. I don't want to scare you because everyone is different and has different outcomes. I am very tiny, 86 lbs. To place the pump, they make a pocket out of fat and place it there. I did not have any fat so he had to cut a muscle and make a pocket. They were giving me child doses of pain meds which was not getting it. Finally after 3 days they got my pain under control and kept me for 2 more days. 

    When I got home, the only time it hurt was when I laid down or got up, only because of the cut muscle. Even knowing what I know now, I would do it again.

    Let me know if you have any more concerns.
    Happy New Year!!

  • jbowerjbower wisconsin Posts: 161

    Hi luv2napp,

    I was supposed to go home the same day but they said I couldn't go until I could go to the bathroom.  Unfortunately I was not able to untill the middle of the night.  I went home the next day.

    The pain was about the same as any other sugary I had.  The thing that I didn't like and hurt like heck the first week was where they put the battery. I had a mix of staples and stitching to cover where the battery was.  It was hard to get comfortable as I had them put it in my backside above the hip.  I didn't want to see the thing as the battery is large.

    They filled mine up during surgery  so it was on after I woke up.  They started with oxycodone and later on changed to dilaudid  and morphine.  I am also on morphine ER pills.

    Do you know if they are using a paddle to connect the leads? That's what they did with mine and I have regretted it ever since.  The paddle has caused me so much pain that I am trying to figure out how to get it removed but that's a different  issue.

    I wish you luck,

    Jason

  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 299

    My pain pump was implanted in September 2017 in outpatient surgery. The pump was filled with morphine and programmed before I was discharged from outpatient surgery. I am so very glad that I went forward with the pain pump implant for a several reasons. As the drug goes directly into my spinal canal, my dosage is miniscule compared to what I took orally. I don't have constipation with the pump like I did with oral meds. I have to see my pain management doctor once every 3 or 4 months rather than every month. Good luck! Jerome

  • Sounds like everyone's surgery was different. I had my surgery done Thursday. The pump was filled with saline and I go in two weeks to get it filled with Dilaudid. I admit, it wasn't as bad as I expected. Yes, I'm in pain. Staples in my back and belly. It's going to take some getting used to having this thing in my belly.  I'm praying I don't get a spinal headache, as I got one after the trial. That was horrible! 

    Jbower, you are on oral meds along with the pain pump? Is it because the pump isn't working well enough to get you out of pain?

    I am looking forward to just going to the Dr every three months. Going every month and fighting with the insurance company to cover the prescriptions is a big hassle.

    Thank you all for responding and giving me hope.

  • memerainboltmemerainbolt IndianaPosts: 4,167

    luv2napp

    I'm so glad your surgery went well and you are home recovering. Just take it easy, like any other surgery, time and patience.

    I have a good relationship with my PM doctor so I did not have a hard time requesting going every 3 mos. If it were me, I would also ask him about the PTM, personal therapy manager. 

    Take care and keep us posted.

  • Thanks memerainbolt. I DO have the PTM. Its the phone device you put up to the device inside? And you can do the bolis?  I'm assuming I take that with me on my fill date. I also got a form that was supposed to be filled out to register the pump but I don't know who fills it out. This has been a confusing time. Seems like nobody is talking to the others. 

  • memerainboltmemerainbolt IndianaPosts: 4,167

    The bolis shot is not a phone device. It's more like a remote, turn it on, place it on the pump, and gently move it around until it beeps 3 times. You will learn like I did where the right spot is. I would take it with you so they can program how many hours apart you can get your bolis. Mine is set for every 2 hrs.

    Good luck and please let me know how you do.

    Sandra

  • So it would be the pain clinic Dr who programs everything and fills out the registration?  I feel like I'm walking blind.

  • jbowerjbower wisconsin Posts: 161

    Hi luv2napp, yeah I am on both the pump and oral meds because the pump isn't working right.  What company is your pump from?  I have a flowonix pump.  I remember I had to go online to the flowonix website and confirm contact info and a few other things.  They also sent me some stuff in the mail afterwards.  I didn't have any paperwork to fill out to give to the doctor.  The company rep should have taken care of it all.

    If I were you I would call the company of the pump and ask about the registration.  You aren't getting anything else besides dilaudid?  That's just a numbing medication, it isn't any pain relief medication.  

    That programmer you have to give yourself boils hits I would take it with you on your visit back.  The crummy thing about that is say the doctor tells you your refill date is 3 months out.  Once you use the programmer it cuts time off the 3 months.  So the more you use it the sooner you have to go in for a refill.

    Did you get a choice where they would put the pump? You mentioned yours is in your belly.  I had a choice of the front or back.  I went with the back because I didn't want to see it.  There is a nice size area where you can clearly see something is there.  

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