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Post L5-S1 Spinal Fusion Pain is there hope?

Hi everyone

New here to this thread, and I am having issues which I need to speak with someone about, as i don't know anyone who has had this operation, i was hoping to speak my mind and just chat with someone who has similar issues. 

I was born with a birth defect which was only picked up when I was 25 (after a year of terrible pain), I had a bone missing resulting in a floating spine my whole life. From scans and tests it was determined that my spine was curving and sinking into my pelvis and a spinal fusion of my L5-S1 was necessary. Surgery was booked and a week later I had my op. 

Recovery was not the best time of my life, but compared to other people with similar surgeries i seemed to be doing good pain wise. I stopped my pain meds a month after my op and moved onto CBD oil (different to THC oil) which worked perfect, no need for pain pills and sleeping pills etc. 

My life carried on with the odd pain here and there on cold days, and just some days in general. 

It is now 5 years later, i am 30 years old, and 3 months ago i hurt my back somehow. I am in constant pain on my lower left side, some days i have tingling in my left leg and the pain seems to be escalating on a daily basis. I have seen a specialist on Friday and will be going to the hospital next week for scans and xrays to see what has happened.

I am currently on a course of Tramedol and Xero which only seems to slightly take the edge off, i am a zombie throughout the day and can't concentrate or focus on anything work related or stuff i like to do. The pain and the realization that my life will be severely affected by all of this is getting me down to the point i don't care for anything anymore. I am afraid that I will end up in a wheel chair or living in constant pain. The thought of having another fusion terrifies me to the point of tears, i feel alone and none of my friends understand what i am going through. I feel like i am constantly talking about my pain now and it kills me to do it but when you are always in pain what else can you do?

I need someone to tell me its all going to be okay, that they've been through the same or similar and its not that bad, but i already know the answer as i am typing.


Thanks for listening  

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Comments

  • challengercchallenger Posts: 1,233
    edited 07/18/2019 - 2:48 PM

    trevheleb06

    Welcome to the Veritas Health Forum

    Learn How to Use the Forum - Take the System Tutorial

    I am sorry that you are going through all this, I understand somewhat, I had my first lumbar fusion surgery in 2015, felt really good for 3 months, after that a little pain came back and then more and more, finally I had more scans which showed the 2 levels above my fusion had failed, like you my mind was in a bad place thinking the worst, I had the second fusion surgery in 2016, everything went well and I was back at work after 9 weeks, so it is o.k. to be scared but please don't let it consume you, when you see the doctor, they should be able to put some of your fears to rest, I have always found that waiting on the diagnosis to be worse than anything else, it is entirely possibl that your problems are not nearly as bad as you think, none of us are able to know that until you see your doctor.

    Remember you have support here, you have joined one great big family that understands what you are going through, ther is always somebody here to talk to, so don't be afraid to use that support.

    Take care and keep us posted

    Chip 

    challenger
    Veritas-Health Moderator


  • WLLadyWLLady Ontario CanadaPosts: 1,480

     Hi trevtheleb06


    i see that you have seen a specialist last week and will be headed to xrays/scans.  That would have been my first suggestion is to see what physically is going on in there to be causing the pain.   I can tell you, many many of the people here on this forum understand your pain and what you are going through!  you have come to a good place for support and someone to listen!
    Will it all be okay?  well, there will be looking at the scans and discussing with your doctor and coming up with a plan that will get you back on the road again!  No one here can tell you how it will turn out, that's completely between you and your doctors.  But there's always good in the bad-it's hard to wait for the results to know what you are dealing with.  maybe some of the hardware failed?  maybe something slipped?  maybe a disc went or something else? hopefully the imaging will let you know, and then you can move forward with figuring out what to do about it.  I've only been through 1 spine surgery and that was a long fusion T10 to S2, with bars screws and cages and pelvic fixation.  i'm certainly glad to have done it, but it's doable to have more than 1 level fused.  There are many people here that have had multiple back surgeries-hopefully some of them will drop by soon. 
    but i do want to say, we understand.....and you are in a good place.....please talk, vent, if it helps you, we are here!

    i'm not familiar with xero.....can you talk to your doctor about a different pain control regime to get your head a little clearer?  there are lots of options for pain control.  and good luck with the scans/xrays, i hope they shed some light on what is causing the pain and you and your doctor can come up with a course of action to help! 


    Kathy
    ---------------------------------------------------------------
    Dec '16 T10-S2 fusion with pelvic fixation. Laminectomies L2, L3, L4, L5, facet removal, cages L4-5, L5-S1, severe scoliosis, arthritis and stenosis repair. 

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  • @challenger and @WLLady thanks for the response, it is comforting to know that a lot of people have gone through similar thoughts and experiences.Since my op i have become a very anxious person and the lead up to doctors visits and scans is always challenging for me, I always dread the worst scenario you know? 

    Luckily my work is very understanding and they have been extremely accommodating in my situation. 

    Don't get me wrong, the surgery was the best thing i could've done, the pain i was in at the time was immense, and for 5 years I've been mainly okay, but it was so traumatic that the thought of going back scares me. I am having that same pain if not worse this time round and i am scared and worried. 

    My pain does seem to be getting worse on a daily basis, my walking has slowed pace considerably and general movements are becoming tedious. My meds seem to have started working, it might have needed time to build up in my system first? Not sure.

    @Challenger how did you deal with having to have a 2nd surgery? 

    I will post an update after my scans and xrays. Thanks again guys, it really does help to chat to someone so thanks! 


  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 383

    trevtheleb06, you are in good company here. I had my L5-S1 fused in December 2005. I felt great for a couple of months after the first fusion but then the pain returned and I had the fusion redone several years later as it had failed. From your comments it seems like you are doing the things most of us do when in your situation. Yes, 30 is young for this but on a positive note your age may result in better and faster healing than those of us that are much older. Good luck and please keep us posted on how you progress! Best, Jerome

  • @Jerome001 Thanks for your comment. How did your fusion fail? What were the signs you went through, and how are you now? 

    I never thought about age in that regard, so thanks for shining a new light, I actually do feel better with that :)

    I will most certainly post an update of events when they occur, for the time being I'm trying to preoccupy my mind with any distraction from the pain, reading all the posts on this site have helped a lot just ease my mind which is great! 


    Thanks

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  • By the time it came down to the second surgery I was hurting so bad that I didn't care what they did, the one thing I going for me was I have complete trust in my surgeon, he told me I needed it or it was only going to get worse, and the pain was getting worse seemed like everyday, the recovery was a little more challenging, but the surgery really was not that bad at all, considering it was fusion surgery.

    Chip

    challenger
    Veritas-Health Moderator


  • Thanks for that Challenger, it does help knowing that it isnt that bad, or as bad as the first. But until i get the scans, i will try keep positive that i have just got a stiff muscle or something small, can only hope.


    Will keep all posted on progress, thanks again for listening guys!

  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 383

    I don't know how it actually happened. Supposedly some of the screws stripped or lost the head all I know is I was in a lot of pain and having it redone did not do anything for my pain level. Getting relief took several more fusions and a pain pump.

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