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Thinking my 2 day, 8+ hrs each day of lower back surgery would free me from pain, that was in 2014,

This is my first post.  And I have no idea of what I will get out of this post expect to maybe vent.  First please excuse my mis-spellings, and poor grammar.  I am slowly loosing feelings in my fingers, especially my right hand.  And then the pain makes me type a little faster, and sloppy.   

As I stated in my title, yes I have undergone major back surgery, and was so hopeful the pain in my lower back, my legs, feet and toes would go away.  That I could drive to work, and arrive there being able to stand, and walk normally.  My surgery went on 2 straight days, the first day I was on the table a little over 9 hours, the second day just over 8.  They kept me out, all I remember in waking up in extreme pain, and praying to God that I am not stuck like this for the rest of my life.  Fast - foword to going home, using the back brace, using what the come to my home nurse said to do, doing everything (even quitted smoking) to get well.  I go back to work end of Sept, and from that point on it has been down hill.    Needless to say, the pain came back, and in rare form!  Bring me to tears driving to work.  My back doc sends me to pain mgnt, says he can't help me anymore, that he can no longer do anything for me, that I need to go to pain mgt to get control of my pain.  I go, of course.

First with my hubby driving, we go to 3 different pain mgt doc offices.  Why 3, well because when I told them what I was taking they said their policy was only 40 mg of oxycodione a day along with 30 mg of morphine er a day.  Well, umm I was taking 140mg of oxycodone, alone with 60mg of morphine.  And I knew with the pain, I couldn't go down within the 30 days they were going to give me.  Of course, this is after I have had the max for the year of injections in my back, so that wasn't an option, that they were trying to give me.  Needless to say, we found a pain mgt that was willing to work with my back doctor, and my pcp and what levels I was at.  HAPPINESS, at last.   That was the beginning of 2015, and also at the time, I came to the realization that I couldn't work 9 hours a day with a 2 hour commute one way each day.  The medications were played with, I was giving Lyricia, which really helped for my feet numbness, especially at night, but it has two major side effects, makes you can weight and extremely sleepy, but it worked!  AHHH Happiness again!  No foot pain, no needles burning in your feet, sleep through the night.. yes I love lyrica, and still do! 

Anyways, after almost wrecking my car, falling asleep at the wheel a few times, getting in big big trouble at work because of lateness, time off, work not being completed, and yes the pain of sitting at a desk, plus a new pain going down my arm, and after a heart to heart talk with my back doctor, hubby and I agreed, I need to apply for disability retirement, and stop working. At this time my pain was being managed by 120 mg oxycodone, 60 mg of morhpine, and 200 mg of Lyrica, and the occasional injection in the spine, and fewer PT trips.   Late 2015 I was approved to leave my job with disability retirement, and being able NOT to HAVE to drive, sit at a computer, write up reports, travel occussionly, and keep track of a staff of 5, life was easier, and though in pain, I was handling it.

Fast-forward to summer of 2017, my right hand is really bothering me, plus my feet and hands are on pins and needles so badly I cant sleep.  I tell my pain mgt first.  They gave me an xray order for my neck and right shoulder.  Next mth visit, there wasn't anything on the xray, so they send me for an MRI, up my Lrycia to 300mg and give me a sleeping medication.  MRI demonstrated multilevel degenerative changes that were most pronounced at the c4-c5 and c5-c6 level.   My pain mgt doctor tells me the result of MRI, tells me I need to go back to my back doctor to set up treatment plan.  I asked for something stronger, that the pain is getting worse, its been over 3 mths that I have been telling them, my pain is worse, and yes you gave me more Lycia, and sleeping pills, but my pain is not going away.  Then they hit me, there are major management changes in the pain management office, and they are no longer allowed to give me the level of oxycodone they have been giving me.  So instead of getting an increase, or the same level, they decreased me by 40 mgs per day!   Its now Oct 2017, I am in shock, I have had a stellar record with them, why would they not tell me a month before, to prepare me, knowing that I am in more pain.  Needless to say, I was blown away.  I went to my back doctor a week after that, he wants 3 more shots, and if no relief, then we need to think other options.  I told him what happened at my pain mgt, and he said he isn't surprised.  NEW LAWS, and regulations, they even prevent him from treating me via through pain meds.   

So what happens, I didn't adjust to well, and came up short, like a day and half, but they had me do the potty test.  It was in the blood, but not over the past 24 hours.  And that is a cause for removal of program, BUT since I had a stellar record they kept me on 1 more mth.  Now I am begging to go back to where I was, because of the pain in my arms and hands.  But no - the rules are what they are.  I did the same thing that month, I came up almost 3 days short, and so so so sick!  OMG I have never been so sick.  I thought I was dying,  My husband was worried to death, I didn't even know it was withdrawel.  I showed up sick as a dog for my appt (you can NOT miss it, or be late or its gone), so sick as I was, I showed up.  I told the truth.  I said for the past 6 mths I have told you my pain is going up.  And nothing has been done, expect lowering my pain meds, how is that right?  6 mths, of the pain chart, first starting it at a 7/8, then 8, then 8 plus then a 9 and yet it meant NOTHING!  Needless to say, that was my last appt with them. 

Enter the year of 2018, and every pain mgt in my area is owned by my previous (remember the mgnt change the 6 mths ago), or owned by the other pain mgt company that doesn't exceed 40 mgs a day of oxycodone.  They were kind to me from where I left, and gave me two mths prescriptions, and then when I started the new one, they let me go the first mth on my old dose and since then have reduced me to the 40 mgs a day (took 3mths).    And I have NO WHERE ELSE TO GO, where I live.  Unless I want to drive 2 plus hours one way every month.  So I still haven't had my injections, (that were ordered last fall), I am in more pain than I can ever remember, and some how some way Tiger Woods has 4 major back surgerys and is out there swing a golf club.  I just sold mine about 2mths ago.  No way.  Heck I cant even drive to the bank - it's 20 minutes to far.  Sleep, what is that?  I can take 4 of them stupid sleeping pills and still wake up with my hands on fire, my lower butt and back screaming in pain.  Because now I have a new pain.  Which is right below my surgery site.  Maybe I feel it because of the reduction.  I don't know.  All I know, it hurts, and I can't get any care for it.  Not in my state, not with the laws they way they are. 

Here I am 52 years old, and I wish for my 30's again.  I wish I could be a good grandmother, but pain prevents that.  I good wife, Lord knows my husband deserves that.  Thank the lord for him!  Tell me, does anyone else out there feel this way?  Wishing to be able to lean over the counter to wash dishes?  Maybe stand for 20 minutes to cook a quick dinner.  I use to love cooking, baking, now all those tools in my kitchen have dust all over them.  Y dust, well you need to be able to reach to clean them, and that isn't in my life anymore.  SEX??  What's that, 52 and that's been out my life since my surgery in 2014.  Why am I here?  What good am I?  Oh I know about the depression, taking those meds too!  Just not enough!    It's crazy, its sooo wrong, not to be able to be treated for your pain.  Unless you have cancer.  Its unfair, its wrong, how can our voices be heard?  Not in my state.  I just want to be treated for what my condition is, without judgement, labels or restrictions.  Like a cancer patient.  Our pain is real!

Well that's my first post... and that's everything that I have to say

Tabel69
Laminectomy and Fusion Spine Lumbar
FLI, L3-5 Lateral Fusion
L5-S1 TLIF, L3-S1 Per.Screws
July 2014
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Comments

  • See that is the problem with opiod pain meds. You develop a tolerance to them, and require more and more for pain relief. You were taking a huge dose, I can see why your physicians wanted to reduce it. Did you ever ask about an implanted pain pump, or spinal cord stimulator?

  • Yes, but they didn't want to go that route, said it was too early.  Wanted me to wait it out.  And I was good for a while, it was the quick reduction, on top of the new increased pain that threw me off.  I didn't ask when I was managing from 2015 to 2017.  Yes I had some bad days, but not driving or having to sit behind a computer really helped, plus I could do my PT without issue from work.  It was when new pain came on, and when that was happening, it seemed like my words were on death ears at my pain mgt place.  My back doctors hands were tied, he wanted shots done and sent over the paper work for them to start.  It just happened at the same time they reduced me, and I came up short.  And since then, nothing has been right.  Im in more pain than ever!  And I have no where to go!!

    Tabel69
    Laminectomy and Fusion Spine Lumbar
    FLI, L3-5 Lateral Fusion
    L5-S1 TLIF, L3-S1 Per.Screws
    July 2014
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  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,745

    Tabel69, I live in California and I'm in the same boat as you. But my first surgeries were in 2002 and many since. CDC and AMA have every pain management and Surgeon's hands tied. They can't prescribe more than 80 mg. of morphine equivalent drugs.  That's people who have never been in chronic pain telling Pain Management Dr.s how much they can prescribe. And people like you, me, and many others are denied adequate pain control. We have to suffer so it looks like the Government is doing something about the Heroin epidemic. Hurting us will not cure the problem.  

    But I can tell you that a pain pump should help by 40 to 60%. I got about 40% relief from mine until new issues have happened with my hardware and the next level up is now bad..

    So sorry, Jim

    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
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