advertisement
advertisement

Pain pump

135

Comments

  • memerainboltmemerainbolt IndianaPosts: 4,135

    jbower

    I am so sorry. But, if there is no one else in the network that deals with this, don't they have to provide someone? Don't give up!! There is someone out there for you.

  • Jpower, I'm so sorry you're having bad luck! 

  • advertisement
  • I just got done with my surgery post op. My staples were removed and 150 mg of fluid sucked out of my belly. I KNEW it wasn't right. He said it's not normal. THAT'S my story with my surgeries. Never normal. 

    Then, the pain clinic called and  changed my fill date to Friday. My medicine didn't come in. I was really looking forward to it!

  • memerainboltmemerainbolt IndianaPosts: 4,135

    luv2napp

    I have mine refilled every 3 mos. It was once a month but it is very hard on me to get out. So he changed the settings. And yes, I'm still in pain but I have so many issues to deal with plus scoliosis. 

    Do you go to the doctor tomorrow?
    Sandra

  • memerainboltmemerainbolt IndianaPosts: 4,135

    Our replies over lapped lol. OMG, was it that infected?? I think it was a good thing your meds did not come in. It will give you more time to try to get this under control.

    Take care
    Sandra

  • advertisement
  • Sandra, he thinks it's just fluid, but he's sending it out for culture just in case. It was reddish. My husband was standing at my head holding my hands because I had no idea what to expect and was nervous and he was afraid I'd reach down and grab the needle. He knows me well. I had fluid drained from my knee when I tore my meniscus and was in tears it hurt so bad. But, this didn't hurt. Just  uncomfortable with his squeezing trying to get all the fluid.

    Yes, it IS probably for the best my meds didn't come. But, I'm looking forward to Friday.

  • memerainboltmemerainbolt IndianaPosts: 4,135

    Please let me know what you find out. I'm looking forward to Friday with you lol. 

    Sandra

  • I was so happy yesterday, felt great when all the fluid was sucked out. But, throughout today, the fluid is quickly coming back. I'm uncomfortable. Trying hard not to get discouraged. I'm still on for the med injection tomorrow. Not sure if the pain clinic will want me to go back to the surgeon or if they can suck out the fluid themselves. And what the heck? Why am I getting fluid buildup?  

    What worries me the most is that my body will reject the pump and I won't even get a chance to see if it works. 

  • memerainboltmemerainbolt IndianaPosts: 4,135

    luv2napp

    Good luck today!! And keep us posted.
    Sandra

  • Ok, meds are in!  The PA had to drain more fluid from my belly. Then he put in the meds. He talked the whole time so I could learn. The saline will work its way out of the catheter and the pain med will start around 2pm tomorrow. He told my husband what to look for and was adamant about bringing me right in Monday morning if I was acting drunk. He said head to the ER if he has to use the Narco. I think that's what the shot is if I od? I like that he takes it serious, because frankly, it's a little scary. The programming is cool to see and amazing that this actually exists. I won't get my bolis thing for a while. He needs to get me on the level that works for me. And Betty me of the oral pain meds. He said not to be a super hero and stop cold turkey. I did that once and paid the price.

    Can't wait to start feeling good!!

  • memerainboltmemerainbolt IndianaPosts: 4,135

    Yeah!!!! I am so glad you have your meds in. And, you have Narcan. If something were to go wrong, such as a leak or your cath moves, then use the Narcan and call 911 immediately. That's what my doctor instructed to us. Hopefully, by this afternoon you will feel so much better.

    Something I forgot to tell you is that I have a medical bracelet. On it is engraved my pain pump 40 ml morphine, doctor's name and phone number. On the front is my name, ICE husband's name and his phone number. I believe anyone with a pump or SCS should have one.

    I hope you are feeling better!!

  • Thank you for that info! It sounds like a Great idea to have one. I'm not sure what my ml is going to be yet, though. He gave me paper work and said to keep it in my purse at all times. I have a list of my meds, Drs and surgical/medical history already typed out and in my purse. That has come in handy through my many surgeries, Dr and ER visits.

    Looking forward to 2pm. Did you feel it when your first dose got released? I have no idea what to expect. 

  • memerainboltmemerainbolt IndianaPosts: 4,135

    You won't feel it like you would a narcotic. I just felt my pain ease up. Just relax, I know you are excited!!

  • Very cool! I am excited.

  • memerainboltmemerainbolt IndianaPosts: 4,135

    luv2napp

    I hope all is going well with the pump. How are you feeling?

  • Hey Sandra,

    Going ok. I felt lightheaded for a bit, but now nothing. It's such a low dose that it's going to take awhile to feel good I'm afraid. And, unfortunately, my belly is swelling again.  The PA said it might happen again. This will be three times. I don't know if I"m going to be able to wait until Friday to have it drained. But, it's not really close, so in don't really want to go until Friday. 

    He also wants me to start coming off my 12 HR meds, but I don't think I'm ready until he ups the pain meds in the pump. I'll call Monday and ask.

    Thanks for checking on me. I appreciate it. 

    Diane

  • jbowerjbower wisconsin Posts: 158

    I have a medical ID bracelet as well Sandra.  I really should be wearing it but I don't like how it scrapes on my desk at work while I am typing.  I was told that you have to have one along with your medical ID card.  That way if something happens to you the medics will know that you have a pump.

    I want to just get a dog tag instead but I haven't ordered it yet.

    Luv2napp at your next appointment ask about a bracelet tag.  I got mine from the pump company in the mail with a welcome packet.  Mine is also too small and is tight on my wrist. Another reason why I don't have it on.

    Having a list of all your medications on you is a great idea and I'm glad you did that.  It really does come in handy as you said since it seems like any kind of an appointment they ask if your taking anything.  

    I'm glad to hear your close to getting the meds put in.  For me when they do the refills I fell really funny for about 25-30 minutes or so.  Then it goes away.  Same when I use my programmer at lunchtime.  I get a funny feeling for a bit.  Those are the only times that happens to me.

    I am concerned about all of the fluid they are pulling out each time.  Do you know when the test results will come in?  I don't want to freak you out as it's too early to tell but the body can reject the pump.  I've read stories on here and other places about people having that happen.  It is rare but it can happen.  Hopefully that goes all away at some point and you'll be all good.

    As far as my insurance rejecting two places/doctors now they have given me a list of others in the area.  I can also find a list myself on their website.  The problem is that the two docs prior I was able to explain everything that has been done so they had an idea of what was wrong.  That's hard to be able to do that without seeing the doc first.

    Otherwise I have to go back to what I was doing with picking a specialist, going in and hear them say they can't help me.  Then I move onto the next.  That all starts adding up quickly with extra bills for a pointless appointment. Not only financially but emotionally as well.  Hearing doc after doc saying they can't help emotionally tore me up. :-(

    Another issue with the docs on their list is that they are under the same company umbrella just branched out under different names.  Doe's that make sense? I don't really know how to explain it well.  I want to find someone that is out of the circle and under a different network. Here in Milwaukee and surrounding areas they are all the same affiliation which sucks and is why they are all saying the same thing.

    I'll either have to give up and live with this or start doing a lot of research out of my area to find someone.  I think part of my issue is I keep giving them the disc of my MRI that was done 2 years ago.  I'm going to stop that as I should have someone do another one so it's current.  There could be changes that has happened in 2 years.

    I apologize for my rambling.

    Jason 

  • Jason, I sorry you are going through all that. I get it, though. When I went septic and lost  my kidney, I kept getting sick. Every three months, no fail, the staph would be back and trying to get out through my back. They would drain me and I'd have an IV that I would give myself antibiotics at home and work. I was 18 and trying to get my life started. After a couple of years, the  Dr looked at my Dad and had the nerve to ask if maybe I WANTED to be sick. What??  I thought my dad was going to jump over the deck and grab the Dr. 

    That scarred me. From then on, everytime I got sick and needed surgery, I thought it was all in my head. Maybe I was making myself sick. I've been to counseling to try to get rid of this guilt feeling and finally have come to terms with myself. I'm NOT making this up. Everything that has happened to me had been real and I don't take garbage from any doctors. If they don't want to help me, then I move on. 

    I will ask about the bracelet. Thank you. And, yes, I'm a little  concerned about the fluid. It's building up as we speak. I don't know if I can go on if this doesn't work. I'm at the end. I'm 54, and have been sick since I was 18. I'm over it. A person can only take so much. 

    I hope you get things worked out. I'll be thinking of you!

  • jbowerjbower wisconsin Posts: 158

    Wow, what a garbage of a doctor to tell you that.  I'd want to hit the guy myself!  I've seen a lot of stories on here with people being told the same things making up the pain.  Luckily I haven't been told that yet.

    I hope they figure out why the fluid keeps building up and it's not your body rejecting it <span>:cold_sweat:" alt=":cold_sweat:" height="20" /></span>

  • Jason, it's sad that doctors are like that. But, luckily, I've only run into a couple. Most have been great and want to help. 

    Has anyone with the pain pump had tingling in their legs and feet? I've always had it, but not to the extent it's at now. It's like having frostbite and its coming unumb. I had it during the trial. The nurse said it would happen, but give it time and two hours later it was gone. I think she upped the meds. Not sure. I'll tell the PA on Friday, but it's pretty unbearable. They are putting numbing stuff in, also, which I hadn't known prior to getting the first injection. Worried this might be something that they won't be able to help. 

  • memerainboltmemerainbolt IndianaPosts: 4,135

    luv2napp

    How are you doing today?

    Jason

    I know how you feel. The only time I go to the doctor anymore is to have my pump filled. Every time I ask what about this or that, I get there is nothing we can do. 
    I agree with you, a new MRI would be good.

    Good luck with your search,
    Sandra

  • Sandra, not well. The pain has actually increased with the tingly feeling in both legs and feet. Like I said above, it happened during my trial, but went away after two hours. Wonder in this is the same  thing, just can't go away until they get my meds bumped up. I'm not sure how long I can handle this feeling. If it's part of having the pump, I don't want it. 

    I'm also jittery and stressed easily. There's a lot going on here, but nothing more than normal people deal with daily. 

  • memerainboltmemerainbolt IndianaPosts: 4,135

    luv2napp

    I just had numbing meds put in my refill last week. But I had told my doctor I did not want it to where I have tingling and numbness where it would be uncomfortable. And he didn't. But it sounds like they might have put too much in yours. How is your stomach doing?

    Have a good night,
    Sandra

  • So, you think it's the numbing meds doing that? I hope so, that way he can back down on that and up the Dilaudid. 

    My swelling is getting bigger to the point it's annoying. I only have until Friday. 

  • memerainboltmemerainbolt IndianaPosts: 4,135

    luv2napp

    Hopefully, that's what is happening. I know you can't wait until Friday. Your stomach concerns me, I hope they can find an answer.

    Take care
    Sandra

  • Well, my week was hell, for more reasons than pain. My pain PA is out sick, so my appt was changed to Monday. Another couple of days with a swollen belly and no increase in my meds. So sad.

  • memerainboltmemerainbolt IndianaPosts: 4,135

    luv2napp

    I am so sorry!! Do you have anything for breakthrough pain? I'm worried about your belly, that has got to be so uncomfortable.
    Take care, try and relax.
    Sandra

  • Yes, I still have my pain meds. They told me to back off one of the 12hr ER, which I did at first, but the tingling and being uncomfortable in my belly made me go back to two a day. Plus the regular breakthrough meds. I'm not going to be a super hero. I'm too tired. I DID confirm with the nurse who works with the PA if it's ok and she said yes. That the dose in the pump is so small it will take awhile to reach my level. I also asked about the tingling and she said that has happened to some other patients and they just stopped giving the numbing meds. I'm hoping on Monday he'll suck out the pump and just  put Dilaudid in. I can't continue with the tingling. It's SO annoying.

    I'll manage with my swollen belly. It's the weekend, I have nowhere to be, so I'm going to relax as much as I can. I have a sick dog right now, and we've been to the vet a couple of times this past week, but I think she's stable for now. 

    Thanks for being so supportive!

  • memerainboltmemerainbolt IndianaPosts: 4,135

    Luv2napp

    Sounds like you have it under control. I'm so sorry about your dog, I hope it is not anything serious. We have a very sweet dog, spoiled rotten!!

    Take care and have a good weekend.
    Sandra

  • Went to my 2nd pump appt. PA said it's not the numbing meds making me tingle. He increased the dosage by 20%. Still in pain and tingling. He said it Would probably take 5-6 weeks to get to where I need to be. Trying to be patient. I go again  on Friday, which is good. I won't have to wait a full week. 

    I'm tempted to go to my chiropractor. My surgeon said it was ok, it's my money as he put it.  Typical surgeon response. I was afraid the catheter would come loose if he adjusted me too much. But, he's one of the gentle chiropractors  and he does acupunture in my calf where I had a nerve severed. A surgeon placed the nerve deep into my muscle to reduce the nerve pain and it worked. However, it acts up once in awhile, and starts tingling. That's when the chiropractor does his magic. He also adjusts so my sciatic nerve is released. I'm hoping some of this nerve pain is THAT problem. I think it is because it's worse on my left leg and that's where the nerve was severed. The tingling in my other leg and foot is bearable now. 

    Funny story. Since I'm a newbie, I thought he was going to put more meds in my pump. So, he'd have to drain the fluid first. He had me hold up the controller to my pump and it downloaded on the computer. Then he did some stuff and said he'd be right back. I laid down, expecting the whole ritual of draining fluid and then putting medicine in. He came back and said I'm good to go. I said what?? Aren't you  going to up my meds? He said he just did. He only uses the needle once every three months when it needs filling again.  Boy, did I feel silly. LOL!!. Byn the way, my body is slowly absorbing the fluid around my pump. So that's all good. 

advertisement
Sign In or Join Us to comment.