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Pain pump implantation

Hello, 

Im currently recovering from the pain pump implantation surgery. I had it installed on Sept 20, 2017. 

Has anyone experienced the feeling that its rubbing up against your bottom rib?

Thanks,


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Comments

  • AJGormitAAJGormit Posts: 1,618
    edited 07/23/2019 - 1:08 PM

    hi mardeesue2

    Welcome to Veritas Health Forum

    i do not have a pain pump so i cannot answer that question, but i am sure other members will respond when they read this.

    i have added two links below to help new members with information on this very informative site.  there is lots of material to research that will help give you the power of knowledge.

    welcome to spine health

    all new members should take the system tutorial 
    aj
  • Thank you so much AjGormit.

    Im obviously new here and appreciate the links you have given me to get started on my journey...

     :) 

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  • memerainboltmemerainbolt IndianaPosts: 4,459
    edited 07/23/2019 - 1:08 PM

    Mardeesue2

    Welcome to Veritas Health Forum
    To answer your question, yes!! It's very uncomfortable and sometimes I'm like, excuse me while I readjust my pump lol
    Mine was implanted Jan. 19th., I was out of options as surgery was not possible. My surgeon literally had no where to put my pump except under my rib in a muscle. I have no fat and that was a problem. But so far I have not had any problems but we are still trying to find the right dose, and that takes awhile. 
    Why did you have to get one?  There are only a few members on this forum that have pumps but we help each other out and are always here for the new members.
    What kind of med or meds do you have? 
    Let us know if you need anything and keep us posted on your journey. I have a journal on the forum called Day One of the Pain Pump Journey Part 1 and now part 2. But I'll be udating it in a few minutes as I went to the doctor and things have changed.


  • Hello Memerainbolt,

    Thank you for taking the time to answer...

    Well, I have many health issues leading up to this point of opting for a pain pump.  Starting with lupus 2005 and then RA being Dx 2014.

    Well if i back track further, early in my 20's i was in an auto accident that broke my face in more than a few places.     Early in my 30's my c spine collapsed.c4-5, c5-6 then c6-7.   I have plates and screws and bone from my hip to keep my head on. Lolo.           From then on it was all down hill (or so it seems as i look back on it)

    I have DDD, multiple fractures in my Tspine and Lspine.  I have osteoporosis and Sacrococcygeal tumors. I suffer from peripheral neuropathy and a plethora of other disorders causing a multitude of pain issues. 

    Less than 10 years ago i was on a boat load of pain medications that only made me a zombie and I decided to fight my way back to the living even though I knew pain was to be a HUGE part of who I am. 

    I have been on Norco for the past many years and found out some of the reason I dont get relief is because of my genetic makeup. By the time my system recognizes any pain medication, its lost all of its helpful properties. Im very new to PM, it was suggested I see one after getting my lupus and RA under control. So i was referred to PM feb this year.   My P.M Dr suggested the pump.  I had the trial of both a stimulator  (which did absolutely nothing and the leads migrated so far off it was more of an hindrance)           I did the pain pump trial (bolus) and I was amazed at my level of activity in that small time frame.

    So now here I'am... I get the staples out on Oct.9th and Once the surgeon releases me I go back to my PM Dr to have it filled with morophine. 

    Did you ever feel a deeeep pain where your back incision is? Like a pulled muscle but feels deeper?

    Thanks and big hugggs...

  • memerainboltmemerainbolt IndianaPosts: 4,459

    So glad to hear back from you, thank you. And thank you for your story even though it's been a tough one.
    I am so glad to hear that you have finally found relief from the pump. As far as the pain where the incision is, yes, and it still bothers me. They had to cut muscles in the back as well as my stomach muscles to be able to put it in. But they will heal in time.
    Just remember, do not bend, twist or lift anything or reach over your head. 
    My surgeon told me it would take months for the scar tissue to form around the pump to hold it in place. Until then to be very careful.

    What size pump do you have? Mine is 40 mgs. and I also have a bolus device for extra doses.
    Take care, let me know if you have any more questions, I'll be glad to help you.

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  • From what i learned about you, you are quite small too. Im 5"6 1/2.  and around 110lbs. They were going to put in the 40ml size pump but once i got to the hospital my surgeon said it was way too large for me and was implanted with a 20ml pump.  omgggg i wonder if they did do a 40ml how much i would feel that!!  

  • memerainboltmemerainbolt IndianaPosts: 4,459

    Yep, we've always wondered why he put such a large pump in this tiny body. I keep hoping I'll gain weight but my metabolism is so high that I require a lot of calories just to maintain 89 lbs.

    Did you get a PTM with yours (Personal Therapy Manager)? It's a remote device where you can get an extra bolus shot every 4 hrs. 
    Let me know your date to have it filled. Start making some notes to take with you for questions and or concerns for the doctor. They will give you a printout every time you go (or should) when they increase the dose and fill it.
    Keep posting, we don't mind the questions. I came on this forum last August looking for information on pain pumps. The overwhelming welcoming, advice and support were way more than I could ever have imagined. I have always had a great support group here, new and old members. 

  • Hi there...

    Its wonderful to pop in and see i have a new comment from you. .

    Wow you are a tiny thing! I was a little sad i didnt have the body size to accommodate a larger pump. As small as you are, im surprised yours is the bigger size. No disrespect to you. Maybe you have more than one type of medicine in yours? I have read other stories on different sites about that. Thats why i ask.

    Yes i did get a ptm with mine. Its sitting on my dresser in its little box waiting to be used. Lolololo. Do you use your often? What medicine do you have?

    Im anxious to get mine filled. I will definitely be coming here and post updates to this posting of my journey. I think this is a great way to document things along the way.. 

    I hope you are getting ALOT of relief! 

  • memerainboltmemerainbolt IndianaPosts: 4,459

    This is the perfect place to document your journey, that's what I did. I have gone back and read, it's so interesting to see how far I've gone and the members who supported me. And you will have that too.
    My pump has 40 mg. morphine. Dosage rate is 2.672. I have a lot going on in my spine plus scoliosis which is fast moving. It has decided to take the muscles and nerves on the left along for the curve to the right. My bolus is every 4 hrs.

    We've had a few people come and go on the forum that has talked about their pumps and how it changed their lives.
    Hang in there, it won't be long.

    I have all kinds of other tips, do's and don'ts. Did they discuss with you about traveling?

  • Hi Sandra!!

    I know its been a while since my last posting.. I pray you had a wonderful Thanksgiving... 

    I have been doing o. K... They had to up my RA infusions at my last rhumy appt.

    I have now had my first fill up and 3 adjustments to my pump and I still have yet to get the relief. Today was an increase of 20% but with Christmas coming up I wont be able to get my next adj until the 9th. I do have an appt with the regular PM office on the 3rd, I guess this is when I could ask the dr. to turn on the PTA and let me use the bolus.? Do you recall when they initiated your use of the bolus?

    Also, is your morphine concentrate 2mg?? I just wonder because i do have the smaller sized pump that holds 20ml. 

    I pray you are hanging in there and getting lots of relief. 

  • Hi Mardeesue2! I’ve had a pump since 2009 and just had a full revision done in 12/18. I’m sorry you have not gotten much relief yet. Hopefully they will turn it up and give you a decent bolus to help you through. 

    Do you remember if you had pain up your back after your surgery? Like up to where the catheter went up to? It feels like my back is spasming and shaky. I’m only a week post op, but I forget what is normal since my original surgery was 8 years ago. 


    Best!

    Kris 

  • memerainboltmemerainbolt IndianaPosts: 4,459
    edited 07/23/2019 - 1:08 PM

    Mardee
    I apologize for the delay in responding. My pump hold 40 ml. and is set for 2.707 mg. a day. But my bolus is set for 1.477 every 4 hrs. which totals 8.862 mg. per day. Add the two and it's a total of 11.569 mg. per day. I forgot earlier to add the bolus in that.
    I do not understand why your doctor has not activated your bolus. It came with the pump so ask him to set it. My doctor set my mine the first day. Where did he put your catheter?

    Hello blackdove!
    Welcome to Veritas Health Forum and this thread.
    I remember my back doing the same thing after my surgery on Jan. 19th. My surgeon said it was the muscle and nerves he had to cut and move. If you don't mind me asking, where is your catheter? Why did you have to get a pain pump?

    Hope you both have a good day!!

  • Hello Blackdove and Sandra... 

    I hope you both had a lovely Christmas..

    Blackdove-Yes I remember clearly the pain I experienced following my surgery. It felt like something ripped my back open and any movement took my breath away. The dr said its because they do cut into the muscle. It took, what seemed forever to geth thru that.  Today actually i go in for an adjustment. I wasnt scheduled untill the 9th of Jan (which i felt was way too far out from my last appt) because they were double booked and the holiday coming up. I was dissapointed, but i asked to be put on the cancellation list and called me friday to come in today! 

    When i had my pump implanted Sept 2017 they wanted to take time before even filling it since i have a few autoimmune diseases and take medication that brings my immunity way down. So they didnt even fill it untill Nov 2017. As far as my bulus PTM I was told by the medical ofc when i see my dr next, ask him to activate it for me. I see him on Jan 3rd. Wish me luck... The office where my dr is, is set up as the main office and then they have a suite behind it for acupuncture and shots and pump refills.  (Hope that made sense)...

    Sandra, im feeling like a brusing/burning type feeling where the catheter incision is. Did you have this too? Could it be because any numbing meds when they did the initial sugery weared off?? 

    How have you been Sandra? Did you ever get your situation with your catheter figured out.? 

    I pray you both are doing well!! 

    Love, Mardee

  • memerainboltmemerainbolt IndianaPosts: 4,459

    Mardee

    If you had surgery in Sept., you should not have any burning. Please make sure you bring this up to your doctor, would hate to think it is an infection.
    My catheter, come to find out by my neurosurgeon, put it at T1 because he knew I would eventually need it higher too. I went to see him a couple of weeks ago with a new MRI in hand from cervical to lumbar. He looked at it and asked if my neck hurt, which I told him no. He showed me the MRI and said it should be. Cervial and thoracic is pretty messed up. So with the catheter being up so high it is covering the pain there (that I didn't know I had). He increased my dose by 15% and said to tell my PM to get more aggressive with the doses. I go tomorrow for a pump re-fill and increase.

    When you go for an increase or pump re-fill they will (or should) give you a "session data report". Always get one, take it home and file it or put in your log. It will have all of your pump information plus any changes made this session. I like having my own records, keeping up with everything myself.

    Please let me know how you are doing or if you need any more advice.
    Sandra

  • Hello Sandra...

    I went to my appt yesterday and they increased me another 20%. I do get the print outs and save them everytime. I did tell them i have not had any relief and want my ptm turned on for the bulus, but the nurse at the pump facility said she wants me to have an mri to see if my catheter is still in the proper place because im not getting any relief yet. Well im at such a small dose it feels like they are dragging their feet. Although i have gotten what seems little updoses. I started at .3000 im now at .5400. My first increase was only 10% because i was itchy. The 2nd was 15% and the past 2 times have been 20% . 

    I was adimant this time at letting them know I feel its been so slow. So i do see my PM Dr on the 3rd for a general follow up and my nurse at the pump facility has requested an mri. So we'll see what the Dr says then. 

    Ps: my catheter is at the t10 i believe. Im sure when I have the MRI it will confirm this..

    Are they gonna move your catheter?

    Stay well sweet lady. 

  • memerainboltmemerainbolt IndianaPosts: 4,459

    Mardee

    You are so sweet, thank you. We are leaving my catheter at T1, that way it covers my whole spine. I have so many different problems at each level and then throw in scoliosis. 
    I would be very adamant with your doctor about your increases. You went through the expense, time and pain to do this and you're still in pain. I looked in my journal in Jan. of last year and my dose was 1.199 mg. and the bolus was 2.389. So you are very low. 

    If you need anything, I'm here. If you want you can also PM me anytime, I don't mind.

  • memerainboltmemerainbolt IndianaPosts: 4,459

    Mardee and Blackdove

    Just checking in on the both of you I wanted to know how ya'll have been doing.
    Mardee, I believe you had a followup with your doctor on the 3rd, how did that go?

    Stay in touch.

  • Hi there Sandra.. Wow its been a long time... I just havent seemed to have energy to write. How sad is that! 

    Well lets see, as of now im at 2.75mg. The only relief i have gotten is I no longer have restless legs at night. I thought that was a success. To me it is at least, it kept up all night long every night... knock on wood its completely gone.....

    I raised my concerns of no other pain relief anywhere, and even told the pm dr that im gettting more concerned about my decision to have an implant. Its not doing its job.. so they added along with my morphine a medicine called bupivacaine at the same dose... this was the end of june. Since then i have had xrays, dexa scan and, 2 mri. showing progression in facent stenosis disk bulges at every level of my lumbar with encroachment and contact and they also found a growth at L3 amongst many other things. They said they would turn on my bolus at my up coming appt on july 31, however they will have me stop my oral norco 10/325 ... Im afraid to do this change because im not getting the relief I expected now. So how would the bulus help me.... Im so aggrivated. ..

    Sorry for jumping around so much, i guess thats what happens when you dont log in and give updates..

    I pray you are doing well..

    Mardee

  • I am getting mine implanted in a coup of weeks. I did the Prialt trial and loved it so will be using that instead of morphine. I hope the pump works as good as the trial did. The first time I walked without a cane and pain in 20 years. 

  • memerainboltmemerainbolt IndianaPosts: 4,459

    scotto

    Good luck on your pain pump implant. Keep us posted on your recovery and how you are doing.

  • Pain pump surgery : I had mine installed on March 20, 2020. Ever since the 2nd day after surgery, I've been having CSF headaches, and really bad. Plus, the post - Op pain has been much worse than I expected. Look , I've had severe chronic pain for almost 50 years, so I know that "pain is not an emergency" (in spite of what my body is telling me), and I know lots of techniques for getting by moment - to - moment in terms of dealing with "acute" pain. But, ever since the "opioid crisis," I feel like I've been put into a low-class category, along with addicts and ppl that use "street drugs." That's in spite of the fact that I've Never had ANY problems handling my meds, and every Pain Doctor I've had has regarded me as the "easiest pain patient they've ever had." I've never run out too early, I don't lose my Rx, borrow pills from others, or any of that other crap! Also, I was in college & Grad school when the chronic aspect of the pain started, studying Neuroscience & medicine, so I took every class & research job opportunity to learn as much as I can. But, the PM doc I have now, well, let's just say I'm lucky to get the meds that I do have, and he even knows my history (initially said he was impressed with me), but now I receive less meds than other patients - - i think it's because he knows I try to not be a "squeaky wheel!"

       Anyway, surgery was this past Friday, started having the  CSF headache Sat afternoon, by Sunday afternoon I called the after - hours hospital number. They had me go to the ER. They checked me out of any "gross" tube leakage or kinks, & treated me with IV fluids, caffiene, etc and told me that it was probably the "overall CSF loss during surgery (& tube placement) that had a delayed effect.", I felt better so they sent me home. But, before I even got home the headache was back, and it just keeps getting worse. But now I notice that sounds from the TV cause "rumbling" in my head, sometimes the voices are "robotic" sounding, and even my own voice causes rumbling. Now I'm wondering if the problem is increased CSF pressure. After all, that pump continues to pump saline into the CSF space, and I know that I do have various constrictions in my spine and where my neck goes into my head , so maybe that's the real problem ! I guess I should just hope that the drains in my CSF will open up and gradually start to work more freely , like the Grand Canyon weathered it's way through the rock to become the canyon it is today. I don't have the benefit of sand & wind tho! (lol)

    And, I am going to do all I can to get them to speed up the process of titrating the meds to a therapeutic level, once they do start putting meds in the pump! Well, this has been long, so I didn't really touch on why I have pain in the first place. Next time , I guess.... Thanks for listening, all! 

  • Ok, so my 2nd post here, don't see the first one, so I guess I have to give it time to get through the moderator. My name's Jeff, my older brother always calls me "Jeffro," so does my childhood best friend, for that matter . In advance, I apologize for my long posts, I guess I have a lot to say. I don't usually post on discussion groups or participate in social media. But I happened along this grou , and everyone seemed so nice, I guess I needed to chat with ppl about this. 

      Why did I get a pain pump? Well, I first started having problems with sciatica in High School (1970) ,  I was always athletic  played team sports & so forth, in fact I was one of those who didn't know when to quit. For that reason, & because I climbed & went everywhere my dad always called me "Jeep" after the character in the Popeye cartoons. Enough about nicknames, except to say that ppl should start calling me "Lumpy" because this pump sticks out so far. I asked the doc to put it in upper quadrant rather than lower so it wouldn't interfere with my pants & belt, we'll see, it still might, it's so large!

    Ankylosing Spondylitis was the original Dx, later added DDD and even DISH, and soft tissue involvement has always been an issue : "Fibromyalgia."  But for me ,  it finally made sense when my current Rheumatogisr told me the more accurate term is enthesitis, inflammation of muscle attachments. When he told me that, it all fell into place, the tennis elbow, plantar fasciitis, all those things that didn't make sense before! 

    And now ,  the most recent Dx that explains all the other problems that I couldn't explain: Adhesive Arachnoiditis. Now I understand the random spasms in my legs,, the passing weak spells in both legs, the "restless legs," the bladder problems, the wierd eye problems, etc, etc.  So ,  I've been on pain meds since 1985, & I've had chronic, severe pain since 1983. One night in early 1980, I woke up after 2 hours with searing pain in my mid-back, along with the Tetanic muscle spasms, and had to stay up the rest of the night. Well, it's been doing that every night since, so I had to learn how to get by with only 1.5-2 hrs in bed each night (or less, many, many nights). Note I didn't say I get that much sleep, no, I only get that much time in bed. The rest of the day, nobody would even know otherwise, because I don't go around acting sleepy all the time . In fact, I've hidden it all so well that ppl who have known me & worked with me for years never knew anything was wrong with me... Except for the fact that I didn't go out to socialize with them at night ,  because it took all my energy to just do my job every day, then I had to spend time in my recliner supportng my back, to ease the severe muscle spasms. One thing all my docs always agreed on:  none had ever seen anyone with such muscle spasms like I had! Yeah, we tried trigger point injections, Botox, nerve blocks, acupuncture... You name it! I've had massage therapists who got depressed & quit working on me because they'd work on me for several hours, a few times per week, and see no improvement !  From my point of view, it was appreciated to get by day to day, but they just saw no improvement overall, got discouraged & so they'd tell me to find someone else!  (Fortunately I have a good one now, who takes good care of me, asking with my Chiropractor.) 

    If you've been paying attention, you might think the dates above don't make sense. That's because, in the beginning, I tried to get by with OTC or even NO meds, before I finally acquiesced to taking narcotics. Like many, I was afraid to get on that Merry-Go-'Round. But, I was in college at that point (I didn't go right after High School), so I learned all I could.  I also worked in the Medical School, so I had good access to info. And I also studied it in Grad School (which was largely Med School classes). 

    ---------------

       FYI I'd like to point out here some misconceptions about something I've seen in other posts here. That is regarding the placement of the end of the intrathecal tube for a pain pump. The surgeons put the tube in at the Lumbar level (easier access), then thread it up through the intrathecal space to the Thoracic level to actually deliver the meds, where they anchor it. The exact level where they anchor it depends partly on the Pt's spine and specific anatomy, but in general the end of the tube is at lower to mid Thoracic level . The reason they have so much tube going all that way is for "strain relief" so it doesn't get dislodged or pulled out, it has nothing really to do with where your pain is. The whole thing with the pain pump is about delivering the meds directly to your CNS, and its much more concentrated (300x) than oral meds (or even IV). So that way, there are much fewer side effects. 

    ----------------

    Back to me .  So, now I've got this pump. I hope they get me to a therapeutic dose quicker than what others are saying, because my sleep has been even less than normal for several months now, I can usually sleep for only 15-20 min sessions. Some nights I don't sleep at all, I just watch the clock for 2 hours or so. I know all of you know what I'm talking about here... 

    OK, now I'm really serious about this next part, it's important. I was nervous about having a "foreign body" inside my body, before the surgery... I wasn't sure if I'd get used to it. So now, every night before I go to sleep, I say to myself, almost like a prayer (and I'm really not making fun of prayer, I believe in it!), "I accept this pump as a new part of my body, like a dental crown or bridge. It's now a part of my body. When I think about it, it'll be just like I'd I think about any other part of my body, like my ankle, knee, etc."    Well, so far, so good - - I haven't been thinking about it as a foreign body, and I think it'll take!  But, I do need to find some sort of support for it, as it feels like a heavy weight hanging off my belly.  And I need to " "train" it to not interfere with my pants & belt, so that when the "pocket" forms it'll be in the right place.

    One another (related) topic... I'd like to start a "registry" here for tool attachments for my pump. I'm thinking, I have all these hobbies, where I use tools, and now I have this motor inside me, I should be able to hook it up to attachments, right?!  Of course, they'll have to be magnetically clutched. Then I'll also need to have a wireless Q-charger (like my phone) to replace the charge I use,  so then i guess I'll need to fashion some solar panels onto a wide brimmed hat.  Anybody else with ideas? Let's hear it, we should get the most use out of the tech we've got, right?  

    Thanks for listening....! 

    Jeff


  • memerainboltmemerainbolt IndianaPosts: 4,459

    Skyzalimit

    I answered your discussion under the Pain Pump discussion, since you posted there too. Also because this is an older thread, there is more discussions on the other one.

    As I stated on the other thread, please keep your discussions shorter, more members will read them.
    Sandra
    Veritas Health Forum Moderator

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