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Pain pump

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  • memerainboltmemerainbolt IndianaPosts: 4,161

    luv2napp

    That is funny!! But at least you are learning. When you go in for a refill, they will drain everything in there, flush it out, then put new meds and increase the dose. Good news about your body absorbing the fluid. So they will not to have drain it anymore?

    Sandra

  • Thanks for the info. I had no idea they could increase the dose through the controller and computer. It's very strange how this works. I'm no longer nervous. Originally, I was terrified. Now, I like learning all about what they do and how it works.

    No more draining unless the fluid is still there when they have to refill. 

    What kind of dog do you have? I adopted my first border collie when my husband and I first got together 33 years ago. I fell in love with the breed. So, I've been adopting them ever since. The one that's sick is a border collie mix. I think she's better, but it's hard to tell until she goes off the metronidazole. She also is deaf. We noticed little things at first, then suddenly realized she just couldn't hear. She's about 10, which I think is still kind of young for hearing loss. But, she's had a rough year medically, so who knows. She's getting a lot of love and her Aussie mix brother is helping her. She watches him for clues on whether to bark or if there's food coming, etc. 

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  • memerainboltmemerainbolt IndianaPosts: 4,161

    luv2nap

    Our dog is part lab and part don't know the baby daddy. But he had to be a hunting dog. She can spot a squirrel or a deer and be out the door, across the yard and in the woods in a second. She's not big which makes for a good cuddle buddy. She is so spoiled. Her name is Oody.

    I hope your dog gets to feeling better. And, how are you doing?

    Sandra

  • Aww.... Labs are good at hunting, too.  Love a good cuddler. 

    I'm doing ok. No change yet, so hopefully by Friday. Did you get queasy when the meds started? I have been very nauseous. I usually take ginger for that, but it doesn't seem to be working.

  • memerainboltmemerainbolt IndianaPosts: 4,161

    I don't think I ever got sick from the meds. Could it be from the fluid in your stomach?
    I sure hope you start feeling better.

    Sandra

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  • Hmm....i have no idea. I'll ask the PA tomorrow. I also want to ask about if I can keep going to the chiropractor. Low back pain and sciatica.

  • memerainboltmemerainbolt IndianaPosts: 4,161

    luv2napp

    Good luck tomorrow with your doctor. Please let us know how you are doing.

  • luv2napp,  My goodness you have been thru alot!  I know little about pain pumps but just wanted you to know I am praying for you.

    Aren't we lucky to have Sandra?  She is always right there to help anyone who needs it and is an expert on pain pumps!  Just want to say I really appreciate her!

      We used to have a black Lab/blue heeler mix.  He had the hunter instinct too.  Most docile dog I ever knew and he was 80 lbs.  But he did not seem to realize that.  He would try to jump on your lap or cram himself into a place too small for him as if he just didn't realize how big he was.  We also had a Jack Russell who was the best dog ever.  He looked just like the dog in the movie "My dog skip."  The lab was 14 and jack russell was 16 when we moved from a 4 bedroom house to a 3 bedroom apartment.  The Jack Russell passed away a month before we moved(absolutely broke my husbands heart!).  Took the lab in 2 weeks later because he was whining alot like he was in pain and vet said he had inoperable cancer so had to put him to sleep.  Killed me!  So we moved into the apartment with no animals.  I cried for days!

    Its amazing how much pets comfort us.  I kind of want to get a small dog but just don't know if I ever want to feel the loss of a pet again.  Stupid I know.  It would also add seventy five dollars a month to our rent so maybe down the road.

    Back on topic(sorry about that) please let us know how things are going.  Dilaudid is an excellent pain med so hopefully you will get up to the correct amount for your body and it will be like a new world!

    Keeping you in my prayers.

    Cindy


  • We are VERY lucky to have Sandra! I appreciate the time she's taken to talk me through all this!  I was a mess for months before deciding to get this done. But, I'm so glad I did. 

    Today was kind of a hassle. I drove  to the pain clinic, which takes about 40 mins. Not TOO long, but it takes a lot out of me. I have so many Drs, it's really depressing. Anyhow, I go in and they didn't have me on the schedule. I was not happy. My 2nd appt THEY canceled because the PA was sick. Ok, fine. They saw me Monday. Then when I checked out, they said Friday. Well, they meant NEXT Friday. Ummm... I'm just starting out, so I need to be seen weekly. Luckily, they let me be seen anyhow. I was so relieved.  They upped it 30%. I go back next Friday. Unless I feel like I can wait another week, then I can go in two weeks. We'll see.

    Cindy, thank you for your prayers. It's nice to have a little support group. LOL! 

    I'm sorry about your dogs! So close together! It's SO heartbreaking. I've loved  and lost four dogs during my marriage. More if you count the ones I grew up with. I keep saying no more, but my heart is made to love animals. I have feral cats I take care of, also. And any nature that happens to come into my yard. Deer, fox, squirrels, birds, and an occasional bear. 

  • memerainboltmemerainbolt IndianaPosts: 4,161

    Cindy

    Thank you so much, your words made my heart smile. It is so good to see back. But I'm so sorry to hear about your dogs. They get in your hearts and stay forever. How are you doing?

    luv2napp

    Thank you too, you are always so sweet. I'm glad you got another increase, 30% at that. I really hope this starts helping with your pain.

    I'm still fighting shingles but staying on top of it. As soon as I feel a blister coming on, I soak it in Calohist and it dries it up. The battle goes on!! You have to laugh to keep from crying.

    Sandra

  • Thank you, Sandra. I'm like you, I have to laugh to keep from crying. I have a close friend that lives nearby. She said she had no clue I was in daily pain, because I'm always smiling. I refuse to turn into a nasty woman just because I hurt. I am going to hurt no matter what, so I'd rather be nice.

    I sorry about your shingles. Hope they go away quickly! 

  • Sandra, I have never had shingles but saw my Dad suffer with them.  Hope you get rid of them soon. I just wanted you to know you do a great job here.  I decided in 2020 I am going to make it a point to let people know how much they mean to me.  I often think it, but don't verbalize it.  I think about those dogs nearly everyday.  Never thought it would bother me so much. 

    Luv2napp, I hear you! I often have people say well you don't look sick.  After years of pain, you just get used to putting on that happy face to hide what you are feeling inside and it becomes second nature.  that is really difficult to explain to someone who doesn't experience chronic pain. 

    I had my monthly PM appointment this morning and the PA was telling me that the big thing that bothers her is how she will have a pharmacist call her and say they don't feel comfortable filling a script for someone because they aren't sure the person really needs it.  She said, " and this is a person who has never examined this patient or read their medical records!"  Certainly not qualified to make those decisions.  She said, "Their job should be just to fill the script as written."  I agree of course!  I once years ago had a pharmacist tell me in front of a line of people that I should really get off pain medication.  I left and never went back there again!  There was alot I wanted to say to him but it's just not worth it.

    Cindy


  • memerainboltmemerainbolt IndianaPosts: 4,161

    Cindy

    Thank you so much. But I get more out of this forum than I give. It keeps me in check, there is always someone worse off than me.
    I retired as a pharmacy tech but I worked for a locally owned pharmacy. We had respect for the patients and the doctors. That's why I have always recommended using a small pharmacy instead of chains.

    Have a great weekend
    Sandra

  • Cindy, I had the same thing happen to me at a pharmacy here. They refused to fill my pain med. I asked why, and they said they didn't think  it was needed. My jaw hit the floor. I then asked who died and made them God? After much back and forth they finally filled it. But, I changed pharmacies the next time. To a local small pharmacy. They've been wonderful. I just text them a heads up what I need and they order it for me.

  • We used to have a small family owned pharmacy but it’s been gone for probably ten years now so not much choice.  I miss that pharmacy because they made everyone feel so welcome.  I do understand where some of the pharmacists are coming from though because the Government has put some of the responsibility on them which is ridiculous.  

    I asked my PA at the PM if she thought things would eventually get back to The way they were and she said yes to some degree but it may take many years and she believes that some things will be like once you open that door it’s gonna be hard to close it again.

    I just have to believe that sooner or later the right thing will be done.  

    Cindy



  • This is way off topic but I wish there was a good small pharmacy near me.  I do the big CVS and there are around 4 technicians plus one of the pharmacists who know me by name (and probably birthday) and are wonderful enough it feels sorta like small pharma..I kind of feel like Norm in Cheers when he walks through the door and everyone says ‘Norm!’...the problems arise when they aren’t on shift.  It seems they just hired a bunch of unsupervised new people. I got a call from a doctor I haven’t seen in 2 years for a drug refill request from CVS for a medication I haven’t taken in over 2 yrs.  

  • Joel1q

    I got the same thing from Walgreens. They knew me by name and even my dogs .  I had to change pharmacies because it was way too many people and I was always standing in line. 

  • Question for anyone who has numbing as part of their meds in the pump. I do... Can't remember the name. Plus Dilaudid. Can the numbing med have a side affect of sore shoulder. I've had this stiffness since the surgery. Make me wonder if they had my arm in an awkward position during surgery. It sure hurts like the crazy.

  • memerainboltmemerainbolt IndianaPosts: 4,161

    luv2napp

    I have bupivacaine in my pump with morphine. I have not had side effects from mine at all.

  • Had my third increase. Then in the way home, my feet were tingling really bad. I KNOW it's the bupivacaine. But, the PA doesn't seem to think so. But, it's not a coincidence that it happens every time I have the med messed with. I want to ask them to take out the numbing med.

  • memerainboltmemerainbolt IndianaPosts: 4,161

    I am so sorry, that has to be miserable. I am supposed to have an increase next month and I don't think I'm going to do it. Thank you so much for keeping us updated on your progress, I know it is helping me.

    Sandra

  • It is definitely the Bupivacaine. It got so bad I called the Dr on call this evening. I was a little disappointed Friday when I got home and called the PA right away and he never returned my call.  But, I'm glad I called today. The on call Dr said it most definately is the Bupivacaine. She's had a couple of patients that has happened to. I asked if I could have my pump drained and Dilaudid put in by itself and she said yes. She's going to call and leave a message for the office I go to so they can know what  has happened and hopefully they will  have Dilaudid there. They MAY have to order it. I hope not. If they do, in the meantime they will decrease my dose until it comes in. It's so strange. I had numbness and tingling with the other doses, but not to this extent,  and I mentioned it but the PA swears it isn't that. The good news is this Dr knows more and he'll have to listen to her. It is a horrible feeling. Like frost bite  that doesn't go away.


    So, why aren't you going to increase your dosage next month? Are toy at the point you feel good?

  • memerainboltmemerainbolt IndianaPosts: 4,161

    We cannot raise my dose of morphine any more, I am maxed out. My PM put the bupivacaine hoping it would help with the pain. I do not want to be numb all over and tingling. I'm going to talk to him about changing it to dilaudid. We had discussed it before but wanted to try this first.

    All of my disc, from S1 to L1 are herniated and or ruptured. Please I have scoliosis and a lot of nerve damage with sciatic. I will always be in pain but it has got to get better than this.

    Keep us posted.
    Sandra

  • I'm SO sorry about your pain. I may never be out of pain, either, but like you said, it has to be better than what we are feeling now. 

    I wonder why Drs are so different in the way they fill the pump? You started without Bupivacaine and they added it later. Mine wouldn't even consider filling it without it.  So strange. I thought I was losing my mind with the tingling. Nerve pain is part of the reason I even started going to the pain clinic. You would think they would see that and think, hmmm.... Maybe we should just do Diaudid. 

    When I looked up Bupivacaine, numbness and pins and needles was one of the side affects. So how can the PA say no, it's not?? And I'm wondering if my back ache and shoulder ache have to do with it also? It  started after the pump fill. I'm really looking forward to trying just Dilaudid. I hope it doesn't take long to get itn

    On a side note, I visit a Knee surgeon on Tues for a 2nd opinion on my knee. I thought I'd be much more along with the pain pump so I could get the surgery done, but I'm starting over. So the surgery  will have to wait for a bit. But, that's ok.

  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 291

    FYI if you have a pain pump I thought it important to share the following information I received from my pain medicine doctor.

    I've been asking forum users about their experience with infrared heating pads but I received minimal response. I have a Medtronic pain pump, so, I decided to ask my pain management doctor about using an infrared heating pad. My pain doctor contacted the Medtronic Representative about using an infrared heating pad and the Medtronic Representative stated “...our recommendation is to never use an external device within 12 inches of the pump or Stim like a tens or heating pad.”

  • Jerome, thank you for that! It's very important to know these things. I'm kind of shocked at how many different answers you can get to one question.

    So, I use a regular heating  pad for my knee and back. Is that considered infrared?

  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 291

    luv2napp, no, there is considerable difference between the typical and infrared heating pad. The infrared heating pad supposedly does not make your skin hot or warm somehow helps relieve pain. I am not too familiar with the science behind the infrared pads but I know they do emit some type of signal. I was curious if the signals emitted by a infrared heating pad would affect my pain pump thus my asking my pain doctor. I've been using a regular heating pad since I had my pain pump implanted and apparently without affecting the pump but I guess I will not use a infrared heating pad.

  • memerainboltmemerainbolt IndianaPosts: 4,161

    Jerome

    Thank you so much for the information. My PM doctor said I could use my traditional heating pad on my back because my pump is in my stomach area. Nor use it on my side.  And, it does not emit signals. 

    Again, thank you for bringing this to our attention.

    Sandra

  • I had a horrendous day yesterday. I had the appt to see the PA to drain my pump and refill with just Dilaudid. When I got there, they said the PA had gone home sick and they would have to reschedule me. This is the 2nd time that's happened. I was livid! It's not a short drive to get there. Not long, but not short. Plus, the on call Dr I talked to on Sat told me to get into see my PA on Monday so they could drain my pump and refill it with just Dilaudid. But, I couldn't get  in until Thurs. Then he leaves. I get that people get sick. However, they need to have backup plans for when that happens. Anyhow, I told them I wasn't leaving until I got the proceedure done. They finally agreed to see me at 3:30, which was 4 1/2 hrs later. I said fine. Went and had lunch and then came back..

    The Dr drained the pump and refilled it with Dilauded. He said it would take 60 hrs for the Bupivacaine to get out of the catheter.  I'm praying this works. I'm still having the tingling, but it hasn't been 60 hrs. 

    The Dr doesn't think it's the Bupivacaine. He wants me to see a neurologist to run a test to see if I have neuropathy. And gave me a presc for nerve pain. It's a newer med. Not Gabapentin. I haven't picked it up yet, so am not sure what it's called. I want to see if the nerve pain goes away first. I don't have time to see another Dr. I have the Pain Clinic Dr, a thyroid Dr because I have Hypothyroidism, a hand surgeon for my knuckle replacement,  a Rheumatologist for my RA, a phychiatrist and phychologist. An orthopedic surgeon for my knee. And of course normal  family Dr. 

    Speaking of my knee. I saw the second opinion surgeon Tues. He said I definately need to have my knee revised for the 2nd time. That will be four surgeries on this knee in the past five years. That's crazy. I need to get this pain pump under control first and off my pain med so that I'll be ready for this. This surgeon said he's going to work with me on controlling my pain. In the hosp, which will be a four day stay, hoping he'll allow me a pain pump to control the acute pain. He said it's going to be worse than any of the other three. I'm scared. I'm not sure I can do this again, but know I have to.

    Sandra, the Bupivacaine may not cause numbing and tingling in you. It's  rare, so don't let what happened to me stop you from trying. 

  • Sandra, how long did it take for you to be completely  of your oral meds?

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