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maybe pain for life

ok that's it I need help

backround spinal fusion c8 through L3 2008. No problems back to work in 6 weeks
Latest issues L4 L5 degenerating with right leg pain. tried facet injections and lasted only a short time. then progressed to radio frequency burns which failed due to weird nerves. Had to stop burning due to pain radiating down my leg. the 2 nerves burned change my stabbing pain to burning pain till regeneration. also had si joint injection to see if there was also issues there. they confirmed I needed to fuse my L4 L5 S1 and bilateral si fusion.

Had new fusions done 3/6/14. Been a very long recovery. I am in more pain now than before surgery. I feel like something is not right. have sever pain rt side low back, hip, down entire right leg, when I had the surgery the whole right leg swelled, in the hospital they did a sono and cat scan. they said everything looked fine and the swelling would go down.

1 week after leaving hospital right leg swelled 3 times normal back to er another sono and cat scan still everything looks good.

fast forward a couple months. I am in more pain now that prior to surgery pt caused more pain. cant figure out what can possibly be wrong going to start going for 2nd opinions. I am on more med than in my entire life. Seeing pain management and been doing research. I might also have RSD. between research and my boyfriend's history with it. I might be part of the problem out of the 90 symptoms I have 72.
My current meds are flexeril, Percocet, lyrica, opana. And I AM STILL IN PAIN!!! I feel like something is wrong, been back to er 3 times since for pain issues. first was given iv delauded iv morphine and iv valumn still in pain sent home. Next night tried a different er was given sateriod injection and delauded in area of pain felt relief. was put on a corse of steroids felt the best I have in months. 2 weeks later hurting again went to pain mgmt. and he changed my oxycontin to opana, and also prescribed Cymbalta. I haven't started taking it yet waiting for insurance approval.

Last night was the worst yet, wound up going back to the er got another steroid shot and another round of steroids, and another shot of delauded, I am at my whit's end and would love any suggestions and help you guys can give.



  • LizLiz Posts: 7,832
    edited 07/02/2014 - 10:11 PM
  • PinkellaPPinkella Posts: 211
    edited 07/03/2014 - 1:40 AM
    Badbackforlife it is such early days since your spinal fusion..did your surgeon not mention that the pain can actually be worse post op befor it gets better?..this is one of the risks with spinal fusion surgery...remember your back will still have a lot of swelling and bruising from the surgery and we all heal at different rates...Physio may cause pain but it's usually recommended you continue with it post surgery to help rehabilitate your back...obviously if your doctor has advice you to stop the Physio then you must listen to his advice
    The best is to go back and see your surgeon...or like you say get a second opinion..
    If the oral steroids are helping with the pain then this must mean you have quite a bit of inflammation post surgery...
    Could you not continue with the steroids short term???
    I am sorry you are in so much pain..I hope the other guys on here can give you some more advice ...

    Facet joint Arthritis L3,L4,L5,DDD.
  • I have had fusions in the past much more than this time. its like I feel something is wrong. that and being constantly mis diagnosed. Its very dis heartening. I have never had this much pain I have between 4-6 at most times unless I have over done it then it would be 8-9. Now its at least an 8 if not 9 or 10. I can keep up with the steroids bc they impede bone growth. Thanks for the suggestions.
  • For me I felt like something was still wrong and so we did imaging and it looked fine but we found out 9 months later my spinal cord contusion wasn't getting any better and I had too much motion, do I got and extension on my fusion.i am still having problems and may possibly have to go back in for another fusion extension. First I would give it time, this was decided on after multiple PT and OT rounds, pain meds, time, and psychology (which has helped with coping). I know the worst thing is bearing someone say just give it time because it's easier said then done but for me my neuro and I were very close and this determined the surgery being needed with open communication. I also know it's hard when your in pain but be very vocal with what has happened and maybe even look at other options including pain meds and things like the TENS unit or nerve blocks. Sorry your in pain I know how you feel( I love with an 9/10 pain everyday and even wake up from it). You can do it!!!
  • with the neuropathic pain. Have you started taking it yet?
    Have you seen your pm doctor since he prescribed it to discuss what is happening? It may be related to nerve pain, and the only things that help that are time, and the use of medications to target that specific type of pain. If the cymbalta doesn't work, then Lyrica or gabapentin might be more helpful, but with all of the nerve pain medications, you have to stick with them until you find the correct dose to manage the pain.
    The swelling can also be from nerve pain as well. And from restricted activity levels. If your legs are in a dependant position, the fluids are going to pool to the lower parts of your body.
    Just a word of caution about going to the ER over and over for pain.....the best idea is to contact your surgeon or your pm doctor, or both , first.......they may have other suggestions for you, to try before going the ER. Going too often can result in setting off red flags with both doctors, especially if they are giving you any prescriptions when you are discharged. Always make sure to let your pm doctor know you were seen in the ER and what treatments they gave you, and before you fill any prescription from the ER, contact your pm doctor to ask him if you can fill it. Otherwise, they can dismiss you if you go ahead and fill it without their permission.
  • PinkellaPPinkella Posts: 211
    edited 07/05/2014 - 12:54 PM
    Sandi I totally agree about ER in my case A&E. My spinal doc said yesterday I'm glad you didn't go A&E and instead got in touch and spoke to your gp doc , because spinal arthritis is not a medical emergency, matter how severe the pain is..not unless obviously you have the symptoms for cauda Equina...and even then they would rather u get an emergency appointment with your spinal doc within the seven days than go A&E with cauda Equina or any other worry new symptoms you may have-I'm learning fast!!
    With regards to your recent fusion my spinal doc informed me yesterday that the pain levels can be a lot worse post fusion for some because of basically the same reasons Sandi has mentioned...he said it can take up t 2yrs to fully recover for some people...
    If this spinal doc is not interested in helping you I would consider changing docs,you deserve the best of care by your doc pre and post op like we all do...
    I'm sorry your in so much pain I hope you can get some relief soon ...
    Facet joint Arthritis L3,L4,L5,DDD.
  • Hi. Im sorry to hear you are in so much pain still(worse than b4 fusion).I have recently posted similar story on '8 weeks post fusion & still in bad pain'...im presently 9/10 wks post fusion & in v severe pain. Since 1st posting I have got valuable advice from sandi & other sufferers. Ive realised It is v early days & like you I have a lot of inflammation that is acute & making recovery pain worse. I probably have little to offer you other than support & what others here have said.Decrease the walking/activities although keep mobilising, try using meds as prescribed ie not trying to manage without them but keeping on top of pain by taking regular doses(obviously only as is recommended by dr).The Cymbalta should also help but be aware it may take between 7-14 days to reach therapeutic levels so stick with it.My surgeon said I was not to undergo physio under any circumstances yet as it would aggravate the inflammation so maybe checking with surgeon re physio wud b good.i also asked re heat packs (and got the ok)as I often find wrap round heat pads are amazing at reducing pain & inflammation . Last week my surgeon said that it could take a long time for all the bones, muscles, nerves etc to settle down as they have all been pulled, tugged & cut during surgery. He said he had basically put my back through the equivalent of a train crash (his words) so to expect a heck of a lot of pain for the imminent future but that he'd be positive it WILL ease with time.Im keeping these words foremost in my mind to try keep positive. I so so hope you start to get relief soon.x
  • badback4lifebbadback4life Posts: 3
    edited 07/10/2014 - 6:59 PM
    I am now 4 months post op. I was told this fusion was going to eliminate the pain I was having
    So not true. My pain is much worse. My last fusion which was much more invasive n extensive I was back to work at 6 weeks. I am very depressed and disappointed. I have an appointment with a new pain management doc next week hopefully he can figure out what is wrong wether its spine/nerve pain or RSD. I just want to stop hurting.
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