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Day 1 of Pain Pump Journey

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Comments

  • Thanks memerainbolt for your words of encouragement.  When I was put to sleep with the mask then incubated for the surgery I was on my back. Then moved into the prone position on the table. I was advised by my surgeon that sometimes the tube can move when this is being done. I have been diagnosed with dysphonia  (my vocal cords don't come together) but they aren't sure what has happened below the cords.  Will be interested to find out what your Dr says about yours.  Please keep me posted.  
  • Memerainbolt - sorry to hear you had a gremlin last week, they do appear and cause a little trouble then go to ground!  Really glad the walking shook it off. It is quite amazing the gradients you discover after surgery.  What you imagine to be flat ground can seem like a tough hill.

    Fingers crossed for you Thursday with doses and hope you can get support with your throat problem.

    Meema - your program sounds progressive and I hope you get improvement with your vocal cords as soon as possible.  I suffer from Laryingitis regularly and sympathise with anybody with throat issues.

    You also mention numbness down the back of your leg that comes and goes.  I have been left with permanent numbness in some areas but also have areas that have positional numbness.  I have now learnt which positions cause this and avoid when I can to try to keep the nerve free.  A little tricky at night but as you and I know, the pain and numbness does cause sleep issues. I try to view that as a type of alarm system to tell me to move to free the nerve.

    I avoid full stretching on waking and try to position my feet at right angles to my legs rather than pointing my toes if that makes sense.  This extension of the leg seems to reduce the awful cramp/nerve entrapment.  I get my partner to tuck the duvet under the end of the mattress to give a support system to hold my feet during sleep.

    I have noticed that when I roll onto my back for relief from other issues, I get more episodes of numbness.  I find that bening my knees up while awake can relieve this or a pillow under the back of my knees can help.  It is easier to put the pillow between knees while laying on your side, then adjust when rolling over, rather than trying to struggle to put one under when on your back.

    A few tips I have learnt along the way and hope some will help in a small way.

    Good luck with your progress.

    Sorry for using your 'Pain Pump journey' Memerainbolt but thinking you will fully understand the support network offered to Meema :-)

    AJ
    AJGormit

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

    L5/S1 herniation Apr 2013
    nerve root injections Oct 2013
    L5/S1 discectomy Jan 2014
    L5/S1 nerve roo &, facet joint injections & edpidural Jan 2015
    L5/S1 revised discectomy, L4/L5 discectomy & Wallis Inswing Stabilisation L4/L5 May 1st 2015
    L4-S1 TLIF with decompression June 2017
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  • memerainboltmemerainbolt IndianaPosts: 6,506
    Meema, I will definitely let you know what my surgeon has to say. They did the same thing with me. He did the stomach surgery first to implant the pump then flipped me over to run the catheter in my spine. But it's funny how we are experiencing the same symptoms.
    But thanks for bringing that up. I don't think I had posted about my throat before.

    AJ, I don't mind you using this thread to help anyone with anything. That's what it's for, to open support for someone else. It doesn't have to be all about me lol!! Your wonderful support and advice is always welcome!!
    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical Story  
  • This is great news to me, I'm glad the pump is working out so well. I go back to my pain doctor on the 28th and will bring the subject up. I think I'll be treated conservatively for a few more months due to my heart surgery. I'm in a cardiac rehab that is going well and also back in the gym 2 days a week when I feel okay. I had lost a lot of muscle when I was in a coma after surgery last October. I think the pain pump would give me back more of a normal life. 
    Diagnosis: Thoracic facet syndrome & cervical and thoracic radiculopathy from car accident trauma.
  • MikethepikeMMikethepike MIchiganPosts: 668
    Memerain,
    when you talk about your nerves feel like ants running up and down your leg do you 
    get that feeling in your hip? I get a feeling more like electricity running around 
    my hips and legs.  I didn't get that feeling till my baclofen dose was raised higher.
      It feels like a mini sciatic nerve. 
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  • memerainboltmemerainbolt IndianaPosts: 6,506
    Lt43, I have lost a lot of muscle too. But mine was from being almost bedridden since September. 
    Since I can't bend over, I've been bending at my knees, use those muscles!!
    You've been through a lot and from me only having mine four weeks, I can see changes already. Good changes. I'm able to have enough confidence in this pump to start making plans for the future.
    I really hope you can get to that point.

    Mike, how are you doing? Ok, I'm trying to figure this nerve thing out. Are you on Neurontin or anything similar?
    When I have these episodes, I've had one last Thursday and one today, it effects my fingers. I can't hold anything, they just jerk and go numb. My legs get real shaky. You described it best, feels like electricity running around. But sometimes it feels like fire ants.
    And yes, my hips too. When it finally dies down I'm worn out.
    But I don't see why yours is doing that after your dose is raised higher. The meds stay in the interthecal canal of your spine.

    Does anyone else have any kind of side effects when their dose is increased?

    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical Story  
  • I'm slowly regaining lost muscle. I'm in a cardiac rehab and have added 2 more gym days in as well. I'm lifting more than I should be but I have no added pain during the exercises and normal soreness after. My chest incision is healing and is becoming less painful. It hurts more to cough or sneeze than anything.

    Prior to my 2011 car accident I was a competitive weight lifter in a senior unlimited (weight) class. I'd like to get back to that level again. I work out medicated or it would be impossible to do.

    Diagnosis: Thoracic facet syndrome & cervical and thoracic radiculopathy from car accident trauma.
  • memerainboltmemerainbolt IndianaPosts: 6,506
    Update: We went to Indianapolis yesterday to see my neurosurgeon for post op.
    I know for sure when I call my PM next week I'm going to have the rate increased. Sitting in the car for 2 hrs one way was not fun.
    My neurosurgeon is so personable and funny!! He said everything looks fine. I've still got stitches that are driving me nuts but he said they will eventually fall out in the shower.
    He said when you're young your incision closes and heals faster. When you get older it takes more time. So, if they are still in there they are still doing their job.
    The only pain from surgery I'm having is my lower stomach. He said I was hard to work with, don't have any length or fat. He had to put the pump vertical, therefore, one end of the pump is in my stomach muscle and the other close to my lower rib cage.
    These pumps are about the size of a hockey puck but they are not completely round, kinda of oval. 
    He said I could do whatever I wanted to !!! If it hurts, don't do it. I can bend, that surprised me, do whatever. He was surprised I'm off all oral meds and fentanyl. And he kept saying you won't need them, let the pump do it's job.
    He also agreed with the way my PM doctor is adjusting the rates. But also stated that the time line of increasing the doses is quick. He feels like my PM is being very aggressive with trying to get me comfortable, which he agrees with.
    He said I will see you in 5 yrs when your battery needs changing!!
    We got in the car, I took a bolus shot. We stopped and ate dinner, yes, I got to eat in a restaurant for the first time in ???!!!
    I was still in pain but I could manage with it. I'm off the fentanyl patch, so now we'll start getting an accurate measure of letting the morphine alone work.
    This has truly been one heck of a journey!! I see light at the end of the tunnel.
    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical Story  
  • memerainboltmemerainbolt IndianaPosts: 6,506
    Meema, I asked the neurosurgeon yesterday about my throat. 
    He said when we flip you over we are very gentle. But the tubes in your throat will rub your vocal cords and irritate your throat. He checked me out and said yes, they are still irritated. There again, my age and healing.
    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical Story  
  • The good news just keeps coming, good for you. I saw a couple of pumps on display at my PM doctor, one was pretty small. I'll try to catch the brand and model when I go there in 2 weeks. With my heart surgery, I was kept in a coma and intubated for almost 5 days. My throat was sore and I ate a lot of ices while I was in there. Funny about healing, I must be part Superman. When I woke up (they woke me up...) my leg incisions were completely healed and so was my chest incision. The doctors all looked at that closely.
    Diagnosis: Thoracic facet syndrome & cervical and thoracic radiculopathy from car accident trauma.
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