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Pain pump

16

Comments

  • SO frustrating. I know I'll feel better once they get it to a good level. I'm already feeling better. I'm off the pills, which is major for me. It's been YEARS since I've been on them.  My husband is the one that noticed. He said I was doing things I wasn't even aware of, things I couldn't do before. I'm still in pain because of my knee, which hurts the hip, then the back. However, before the pump, my whole body ached, like I had the flu. I couldn't do normal, everyday things without paying the price. I'm one of those, they will keep going no matter what. And I was getting very depressed. Didn't want to live in pain. Wasn't sure I could take much more. Then this. I'm blessed to be able to get the pump.

    I have sciatica, also. But, my chiropractor helped with that. Have you considered that? Mine is very gentle, moves my spine of the nerve. So, when it acts up, I see him. 

  • memerainboltmemerainbolt IndianaPosts: 4,697

    I am so glad the pump is helping you. And hopefully it will keep getting better.

    I'm like you are, keep going no matter what. I know I will always be in pain, to some extent. I just have too much damage, scoliosis and so many health issues. I can't do near what I used to so I do what I can and have learned to pace myself. I cannot go to a chiropractor, my bones are so brittle. I was to have a bone density scan tomorrow and it was cancelled. But I wish I could.

    Take care and remember, just because you are not hurting, be careful with what you do. Every time I have a burst of energy or feel half way good, I overdo it.

    Sandra

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  • So good to hear you are feeling better and off the pills!  I can only imagine how good that must feel.  And your husband noticed.  How fantastic is that?  You are finally "living" again.  We forget what that is actually like.  I am just so thrilled for you. 

    Cindy

  • Wow! I found this forum just a few days ago, I've made 2 previous posts, then I found this page with more recent posts. I wish everyone well. Sorry, but I have another long post! 

    Seems like I didn't get any choices for the pump trial, nor whether I stayed in hospital after surgery, & a few other things mentioned. 

    Ever since 1985 when I started on chronic pain meds , I've had really good relationships with all my PM docs... Until now.   I think the reason for the good relationships was because (1) I've always taken responsibility for myself, my actions, my Healthcare, etc and (2) I believe in having open & honest discussions with my doc. They've always said I was the easiest & best pain Pt they had, and I never did any nonsense with them, like running out of meds early , going to other doc , etc.

    But in 2010 my wife & I had to move to a new city & state for her job (I was on disability by then), and I went to a Primary Care doc who started filling my pain meds. That was supposed to be temp until they found me a new PM doc , but that never happened! Instead, the Primary doc kept writing the Rx and had me sign a "narcotics contract" that was frankly insulting. At the time, after my disgust passed, I just thought, "Well, I don't do any of that behavior anyway!"  Meanwhile, he never discussed any pain issues with me , not how I was doing, nor why I was taking the meds . I'm sure I told him anyway, and it did concern me that he wasn't interested. But he never really got to know me as a Pt. Then, when the" opioid crisis" started, one day he said, "I'm not comfortable writing these Rx any more." At that point, I decided to "take charge of myself,"  that is, that it was my decision to drastically cut back on meds to reset my body. (I didn't really have a choice, but this attitude made it easier than if I was fighting it the whole way.)   My Rheumatologist referred me to a PM doc (when I was still on high doses of morphine ER), but the PM doc refused to take me as a Pt, claiming he would "lose his Medical license." My conditions are well - documented, by the way!  And, my Rheumatologist said he had no idea why he acted that way!  

    I had a hard time finding any PM doc who would take me, even later, after I  was down to 1/10 of the previous dose that I had taken for 25 years or so! Nobody wanted me, and they all acted like I was an" addict"---even though I clearly didn't exhibit addict traits. But I only had my Rheumatologist to vouch for me, since the guy who wrote my Rxs for the past 7-8 years never even got to know me!  Luckily, a doc who knew me through an org that I volunteer for came to the rescue,  but he lives in a neighboring state, just over the border. He's licensed in my state but it's just too far to drive. But he helped me by writing Rx at the dosage I was at then, to allow my body to adjust, then I asked him to give me smaller dose pills, so I could continue to decrease. Just by chance I got down to the daily level that's supposedly allowed by State law (he says its not a law, but a recommendation, but my now current PM doc says it's law). Anyway, once I got stabilized at the 1/10 dose I was at for so long, I went back to the doc who is now my current PM doc to ask him if now he would prescribe for me.  (He's the one who turned me down before.)  At the time, he said, "Sure, no problem." And he told me how impressed he was that I was able to reduce my meds so much w/o having to go thru rehab. 

    But now it seems like our relationship isn't so great : he treats me like an addict a lot of the time it seems, and things are just not great. He talks at me, not with me, etc.  But I thought we turned a corner when he recommended the pain pump.  I try to give him the benefit of the doubt, as I  know that docs are under a lot of scrutiny these days . 

    I've only heard of one case where anyone with a pain pump got meds in it right after surgery, that's in this forum. Usually it's saline, but I'm not sure why. 

    My surgery went well, as far as I know... But, the pump is much larger than I expected, the post - Op pain was worse, and now, 5 days after surgery and I still have a really bad CSF headache!  But I'm trying to look up, everyone tells me the pump is a game changer!   I, too was worried about having a foreign body inside me, getting used to it, that is, but I've already made my peace & accepted it . Mine is in my upper right abdomen, that's the only choice I got!   (upper/lower). 

     But one thing I don't like is that my PM doc told me that he doesn't use the "remote" that allows for a bolus for breakthrough pain, he told me, "Yeah, then the Pt sits on the bottom until it's allowed, then they continue to sit on the button ... You may as well increase the dosage!"  That's correct, I agree !  So, does he increase the dosage?  Time will tell, but previous experience says, "No!" For myself, I know from experience that I would certainly be more judicious in the use of that device.  

    When I was "on deck"  & waiting for surgery, I briefly saw the device Rep. I asked him about it, he asked who my PM doc is. When I told him, he scoffed and said ,  "Yeah, he doesn't use them."  So... yet another choice that greatly affects my quality of  life, that I get absolutely no say in. But ,  I'm still looking up!   I can choose that! 

    Sorry for another long post! 



  • Thank you, Cindy.  I sit and wonder why I debated so long to get this done. Scared of the unknown, I think.  When I went to the pain clinic yesterday, I saw the Dr not the PA. The PA has been out sick a lot! Anyhow, the Dr bumped me up to 2 mg which he wants to leave me at until after my knee revision. 3 is the highest I can go, so he's worried that after time my body will get used to this, also, and I have nowhere to go. Makes sense. That's why they mix the meds with bupivicaine, you get more bang for your buck. But, bupivicaine makes my legs and feet go torally numb. 

    I get the pump refilled at the end of April to make sure I have enough to get 

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  • memerainboltmemerainbolt IndianaPosts: 4,697

    Skyzalimit

    Welcome to the forum! I have the remote device and can give myself a bolus every 2 hrs. But no more than 6 a day. My PM doctor has it set up that way. Previously, it was set for every 4 hrs. This may be something you could tell your doctor. Having a good relationship with your PM doctor is very important, besides, you are going to be with him for a long time. Be adamant about what you know you need, take notes with you and questions and concerns for him to answer.

    We decided to go with a pump, not because of doctors being under scrutiny, but because the meds were no longer working. I know I will always be in pain but I'm way better off than I was.

    Good luck and keep us posted. A little advice, try to keep your post shorter and to the point. More people will read them.
    Sandra
    Veritas Health Forum Moderator

  • Hi Skysalimit,

    Your story is so like Mine. Getting to the pump was a long time coming. After having it implanted, saline  for the first two weeks. Then they put Dilaudid and Bupivacaine in. I had a bad reaction to Bupivacaine but it took three weeks for them to listen. Now, it's just Dilaudid. Told me to go slow getting off the meds, so I did. Then the Dr pushed me to get off them. So, I did. It's so freeing. Unfortunately, I'm having my third knee replacement. One replacemeny  and two revisions if you want to get technical. That's happening on May 6th. This is a whole new surgeon. Harder surgery, longer hosp stay and longer recovery. Back in pain meds, but hopefully they will work better now that I have the pump.

    I wish you luck in your journey. This is a great place to come and talk. 

  • How is everyone holding up with the Coronavirus and the closing of everything and in my state, mandatory to stay home unless it's important. I'm trying very hard not to get sick! That's the last thing I need!  Or anyone of us for that matter.

    Unfortunately, I had a slight fall and sprained my ankle. It's all be because I walk funny because my knee hurts, which makes my hip hurt, then my back. Haven't decided if I need to go to the Dr.


    Skysalimit, I meant to ask what you meant by CSF Headache.

  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 328

    I've said before that it is amazing how each doctor deals with the pain pump drugs, doses, etc and Skyzalimit adds to my amazement! 

  • memerainboltmemerainbolt IndianaPosts: 4,697

    I had to go to the hospital yesterday to have my pump filled. We go through the parking garage to the 5th floor, the door is to the pain center. There were not any cars on any level. The nurse saw us pull up, she had the doors open up, and asked me a few questions. I know all of the nurses and PA's so well. The waiting room was empty and all I had to do was walk thru the waiting room as the other nurse was already waiting for me. When my doctor came in he said they were closed, I was the only patient for the day.

    But they are seeing patients every day thru teleconferencing and Skype. Only emergency surgeries, no procedures or injections but they want to stay in touch with their patients and make sure they have their meds. He told me to go home and stay there, which he knows I do anyway. But if my husband got out to be extra careful, this is going to get worse before it gets better. They do not have anyone in the hospital there with the virus yet, we still don't have any cases here either.

    I have always said I am so blessed to have a good relationship with my doctor and the nurses. He increased the bupivacaine and we will discuss maybe changing meds in June when I go back for a refill. 

    Everyone please take care. Since all of our immune systems are already compromised, we do not need this.
    Sandra

  • Sandra, isn't it so strange being on the road without many cars? I don't know how it is in Indiana on a normal basis, but around the Northern Virginia area, it's rush hour all day long. Now, it's so quiet, which I love. We live right on a cut through street (didn't know it until we bought the house) that is constantly zooming with cars. Now, it's peaceful. Makes me think there might be one more move in my future. This was supposed to be our forever home. Still might be. We'll see.

    I'm glad you were able to get your pump filled. Mine is last week in April, unless this virus continues and they postpone my knee replacement revision. Praying not, because I really need it done. Tired of being in pain. 

    Everyone hang in there! 

  • You are NOT going to believe what I did.  Fell going up the stairs to our deck. It's only two stairs. Took stock of where my pain was and realized my left ankle  was swollen. Thought, darn, that's all I need, a sprained ankle. Gave it a week, swelling is still there and the pain was getting worse. Decided to have it looked at. The Ft Dr took xrays  and it showed a broken Fibula . How in the world did a small fall cause a break? The Dr did say I was lucky. It snapped in half, then snapped back so it aligned back up. He said if I had been going downstairs. I would be going into surgery right now. I'm in a boot for 4 weeks. So, now I habe a bum rt knee and a broken left ankle. If it didn't heal, I'll need surgery before my knee surgery. Please pray it heals. I'd be out of commission for six months. Then a test for my knee. My future looks bleak at the moment.

  • memerainboltmemerainbolt IndianaPosts: 4,697

    Oh no!! You poor thing, I am so sorry this happened to you. Hopefully, since it aligned back up, it will heal. Just be careful. And yes, praying that it does heal.

    Sandra

  • Thanks. Yes, I try to look at the bright side of this. We are on lockdown, so I have nowhere to go. Should take advantage of this and watch shows I have taped on my DVR. My problem is I can't sit still. Maybe it's an good thing, it's kept me going all my life even when I wanted to give up. 

    It IS making my bad hurt, since I'm REALLY walking funny now. I was going to the Chiropractor, but it's too hard with this boot. I'm exhausted before getting in the car. 

    I hope everyone here is doing well. Thinking of you all during this hard time.

  • Praying I can get into the ft Dr tomorrow. I knew I had hurt both ankles when I fell, but the right one didn't look bad so the Dr just xrayed the left, and found it broken. Now, my right ankle is SO painful and swollen. Hoping it's just a sprain and I'm over using it. Maybe this ONE time it will be nothing bad. It would help my back to wear two boots, though. This wearing one is killing it.

  • memerainboltmemerainbolt IndianaPosts: 4,697

    luv2napp

    Did you get in to see the doctor? Sorry I have not been around, had a rough coupe of days.

    Sciatic pain has been so bad I had to call the doctor. Then add all the stress and that does not help. I had to pick myself back up mentally and move forward. I'm not the only one stressed out and struggling right now.

    Let me know how you are doing.
    Sandra

  • Hi Sandra, 

    Hope you feel better soon! I understand, and hope you forgive my delayed response, as I've been doing anything to distract myself from the situation - - so that includes not reading this forum.

    No, I didn't get to see the surgeon while I was having the severe CSF headaches, but I did have to go to the ER, twice in fact , both were because of CSF headaches. I think I was leaking small amounts of CSF from the lumbar area where the deep incision was made to access the spinal cord to feed the intrathecal tube in. From there the open end was pushed up into the mid-Thoracic level (T-6), then the tube was anchored at the lumbar level where it exits the spinal cord by placing an anchor device on the tube and suturing it to the deep ligaments. (I had the details of the procedure explained to me, plus I read the surgical notes - - or rather, my wife read them to me after accessing my medical records.)

    Anyway they use a special "tunneling tool" to make a tunnel under the skin to feed the tube around my side to the front, where the pump is placed. Since I normally have a lot of soft tissue pain, I expected lots of post - Op pain from that part of the procedure, but strangely enough, it hasn't bothered me. In fact, the pain from the entire procedure hasn't been all that bad, really, except for the first few days . Every day it was remarkably better, the first & 2nd days it was pretty bad. Also, the incision over the lumbar spine has been much more painful and sensitive than the skin stretched over the huge pump, mainly because it was very deep (to get all the way into the vertebrae to the spinal cord),  and the surgeon said they had to cut some muscles and so forth. No, the CSF headaches were the worst, where I suspect it was leaking from where the tube left the slot in the sheath around the spinal cord in the lumbar area. It just took about 10 days to close up & seal. Anyway, 18 days after surgery I finally got a call from the surgeon (after many calls & messages from me, to set up the 2-week post-op checkup appt), and we had a "virtual" visit, where he answered all my questions and then "released" me, so now my PM doc can start putting meds in the pump! (Yea!)

    Thanks to everyone for all the well wishes & prayers! I just hope it doesn't take too long to get the dosage of the meds to a useful level. Reading some of the posts on this forum makes me nervous about that, so I'll be pestering the doc!

    Take care, 

    Jeff

  • Sandra,I wrote this and forgot to senD. Im sorry you're having a rough time. With us, we live day by day. I THINK you above message was meant for me? 

    I DID get my ankle looked at. Good news, it's not broken like the left one. Bad news, my tendons are so overworked, is causing pain and swelling. He wants me to try to stay of my feet as much as  possible. He asked why I was walking around so much and my husband said "i can't get her to sit still, Doc." LOL!  I'm trying, but something always comes up. Like today. Our washer/dryer combo stopped working. So I'm waiting on the repairman. Always something.

    Jeff, the headache, you're saying it's the spinal headache? &nbspm? If so, they should have done a blood patch. That works immediately! And your pump sounds  like it's going well! Everything you explained how it done is true. &My boothpump is a little too deep, so they have a hard time   reading it.

    I was hoping to get my bolus, except it has to be when the metrix shoes me beolfbu): to use it.

    I'm still on for my knee revision on t

    ?stnc day after a boot 

  • memerainboltmemerainbolt IndianaPosts: 4,697

    Sounds like I am not the only one having a rough time lately. But compared to the rest of the country, mine is minor, I should not be complaining. I am well, so is my family and friends. And everyone on the forum. That, I am thankful for.

    My husband always tells me I have an excuse to be up moving and doing not a reason lol. And he's right. I've really had to put the brakes on lately or I know I will only make it worse. Except today. I had to spend the day making him masks to wear, he wanted them out of camo. That's the least I can do for him since I can't get out.

    Skyzalimit

    I apologize for not remembering, but what meds will be in your pump? I never went thru a spinal headache because my surgeon kept me flat for 24hrs. All surgeons doing things different. Your description of the "tunneling" under the skin was totally different than my surgery. But what works is all that matters. I hope you get your pump filled soon.

    Everyone take care and stay safe
    Sandra

  • Skysalimit, I had a spinal headache after the test for the pump. It happened five days after. I called my PM Dr and they said to just lay flat and drink caffeine. Did that  for a day and night. Couldn't eat because I couldn't sit up long enough. Had to text hubby to come home the next morning to take me to the ER. I crawled back into bed and promptly passed out. Next thing I know I hear my dogs barking furiously. Wasn't  a thing I could do. Then my bedroom door opened and I thought it was my son. I was hallucinating. It was the paramedics doing a wellness check. My husband called because he  couldn't reach me. My son had been calling, also. He's a state trooper but was halfway to Richmond. Went by ambulance and got a blood patch. Immediate relief. 

    The tunneling tool is normal. They used that for mine. I did not get to lay down for 24 hrs afterwards. They woke me up and pushed me out the door.

    Sandra, the place where my pump is, it's moving around and sometimes there's pain. Is that normal?  I'm supposed to get it filled again  on the 27th. Needed to get it done before my surgery, but now I don't know. It's all up in the air and I don't like living like that. .

    Because of all this virus going on, not sure about my knee surgery. For now it's still on.

    Hope everyone stays safe.

  • memerainboltmemerainbolt IndianaPosts: 4,697

    luv2napp

    Going by what my doctor told me, my pump is in a pocket made of muscle secured by scar tissue and should not move around. And mine doesn't.  I do have pain in the lower area sometime, he seems to think it's just the pump rubbing on the muscle.

    Hopefully by the 27th things will have calmed down some. But still be safe. If it were me, I would still wear a mask and gloves when you go. How is your ankle doing?

    Stay well and have a good day.
    Sandra

  • I guess mine is still early. I heal strangely.  Bad Scar tissue and keloid scars. That might be why I'm feeling things inside. 

    My pump refill might be later. It depends on if I'm having  my knee surgery on May 6th or not . We were going to refill it before I couldn't walk. 

    My ankle is ok. I'll find out on the 27th. Praying it's healing. If not, he'll have to do surgery. The other ankle hurts more, all swollen because I'm overworking it.

    How are you feeling?

  • memerainboltmemerainbolt IndianaPosts: 4,697

    I'm still fighting sciatic pain. My doctor called in a strong anti inflammatory but it has not helped very much. Like everything and everyone else, I just try to deal with it. Take care.

  • memerainbolt, I hope that you start feeling better soon...sciatic pain is brutal  

  • memerainboltmemerainbolt IndianaPosts: 4,697

    scinmyheart

    Thank you so much!! And yes it is!! One day it hurts to breathe an the next you can tolerate it.

    Everyone stay well!!
    Sandra

  • Sandra, I'm so sorry you're fighting this pain constantly. It's tiring. Makes you wonder why some get the wrong end of the stick while  others just breeze through life like nothing. Nerve pain is the worst! It can drive you mad. I'm fortunate I found a chiropractor who can get the nerve released. But, I know you can't do that, and it's unfortunate.

    Try to hang in there! 


    Diane 

  • memerainboltmemerainbolt IndianaPosts: 4,697

    Thanks Diane. I talked to my doctor Fri., and when it is safe again, I told him I am ready for him to do something, even surgery. I'm tired of the injections, they don't work, and the meds don't help half of the time. So we'll see.

    Take care
    Sandra

  • Surgery for your sciatica? 

  • My knee surgery is now scheduled for July 15. Mixed feelings about it. Wanted to get it over with, but relieved I can concentrate on my ankle and hopefully it will heal ok. Now I have to call the pain clinic and get my refill date changed to later. It was supposed to be on the 28th so I had  it done before surgery. 

    I'm not going to get a bolus. He told me I'm at 2mg and the most I can go is 3. He doesn't want it to stop working since I'm not that old. A little confused about that. Ill talk to him again on my next visit 

    Hope everyone is well!

  • memerainboltmemerainbolt IndianaPosts: 4,697

    Diane

    What did he mean by the most you can go is 3? At least you now know your surgery date and can get prepared. I really hope this will be the end of the surgeries for you.

    Take care and have a good day
    Sandra

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