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Can't take anymore

Posted , 7 users are following.

Carolineq8
Carolineq8

Hi guys, so the latest is I had an annual MRI on 8/5/17 to keep an eye on the thoracic arachnoid cyst but a few days later something changed with my lumbar, Iv suffered with chronic pain 14 years now but it felt like my lower back had come away and that's the only way I can describe it, a certain way I moved also felt like something was sticking in me so I thought maybe the fussion had broke or a screw or something, my GP sent me for an emergency MRI on the 8/6/17...anyway Iv spent the past 7 weeks in exrutiating pain when I try to walk, stand or sit and my pain has gone from a 7 to 9-10.

My results are that there dosnt seem to be any change when comparing the two and that no nerves or discs are compromised. I am at my wits end now and can't imagine carrying on with this pain it is seriously mentally messing with my head, I am so down at the mo because I feel like there are no answers to putting this right if nothing has shown up.

I am going to have EP TESTS on Thursday followed by EMG tests and seeing a phycotherapist on Wednesday to help me manage better with the pain, how can I be in so much pain and there be no change on my scans? Could it be that my back is just knackered and that's it.

How do you carry on like this when there dosnt seem to be any hope of getting better

0 likes, 24 replies

24 Replies

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  • CHICO_MARX
    CHICO_MARX Carolineq8

    Posted

    You need a CT/Myelogram with contrast.  It's the "gold standard" test for the spine.  Shows everything that an MRI can miss...and it is not infrequent to get an inconclusive MRI...had it a number of times.  Get the CT/M and have it read by a COMPETENT neuroSURGEON...

    • Carolineq8
      Carolineq8 CHICO_MARX

      Posted

      Hi chiko I hope you are well, thank you for your reply. I'm back to see my GP on Wednesday and will ask about the ct scan, I spoke with my chiro this morning and he agreed with you that it is gold standard. I can't understand why they havnt sent me for one by now with all the issues I have, I am feeling mentally better today but still in a lot of pain, thanks again 😊

    • CHICO_MARX
      CHICO_MARX Carolineq8

      Posted

      Don't know if a GP can order that scan but the only one who can read it with accuracy is a neurosurgeon.  It's kind of "a map of your spine".  When an MRI is inconclusive or doesn't show anything, this is THE test to find out what's wrong. Caught my L2/L3 stenosis last October.

    • Carolineq8
      Carolineq8 CHICO_MARX

      Posted

      I'll be going back to see Neuro in a couple of weeks after Iv had the EP & EMG tests, I will ask him about these recent results and then mention the CTM and see what he says, thanks chiko 😊

    • CHICO_MARX
      CHICO_MARX Carolineq8

      Posted

      "I CAN'T TAKE ANYMORE!!!!"

      The are times I wanted to drive off a cliff.  Sorry...completely out of luck.  I live in Texas...everything is flat...no cliffs...RATZ...  I considered calling Carmine and Paulie in Brooklyn.  They'd come down, do the two "taps to the head" and dump the body for free.  I almost made the call a few times. 

  • Annab1983
    Annab1983 Carolineq8

    Posted

    Hey there, I’m so sorry to hear about your pain. I can identify completely. My spinal cord twists and as a result all of the nerves between T2-T9 are under constant assault. I have lived with severe pain for the past 17 years for sure but for as far back as I can remember, even into childhood, I can not think of a single day that I have not been in pain. It’s worse than ever now. I tried a spinal cord stimulator last year and because of the rotation of my cord, there is no way for them to place the paddle correctly. I have nerve damage from it and had it removed in Jan this year because I could not turn it on. Even when I was off, I felt like I was being shocked with a cattle prod and a jellyfish at the same time. It’s been excruciating. 

    I am waiting to have a trial for a pain pump but because of the crackdown on illegal users, I have been told that 90% of my medications will be taken away in 2 months. My dr is sick about it because he is a compassionate man who has helped me more than anyone else. My pm is the one who found the twist in 2016. Before that they just assumed it was from the structural problems that also exist. 

    I can understand and relate to your feeling of desperation. I don’t know what I will do if this doesn’t help. 

    I’m afraid a lot of us in this chronic pain will now suffer to a point we can no longer bear. I think we will find many people reaching the point of no return and kill themselves because we can’t take it. 

    I know something has to be done with all of the people who are doing illegal stuff but it’s so unfair to treat everyone of ya like we are criminals because our body isn’t perfect. 

    All I can say is that to date, I have tried to keep this in mind, it can always be worse. I try not to allow myself to think that I am all alone and that I feel worse than anyone else ever. I wish you the absolute best and even though I know it doesn’t help much, just know your not alone. Talk to those of us who can relate and lean on us when it gets bad.  That’s why we’re here. To support each other because the rest of the world considers us as less than because we are forced to deal with this daily. 

    I’m ordering CBD to see if it can help some. There is some evidence it can help and it is completely legal. It does not have the THC that causes the high so it’s just working on the pain. Make sure you don’t get hemp oil instead. They are dofferent and hemp is not effective for pain. I’ll let you know how it goes. Please don’t give up. I’m here for you

    • Carolineq8
      Carolineq8 Annab1983

      Posted

      Hi and thank you for replying, since I posted things have not got any better, my EMG tests came back fine, Iv had X-rays and ct scans and was told that a screw from the fusion was loose and not to worry it can be re done then I got a letter saying it's wear and tear and there's nothing more can be done and we'll see you in march (this was July/August) I was devestaed anyway I eventually found an ortho doc through my chiropractor and went private, he looked at my scans and told me I have no fusion and that revision surgery is an option then a week after I saw him my back went again I'd barely left the house in months and here I am again so I rang my new doc and went through the NHS as I cant afford to see him privately. 

      What was very interesting is he asked me about my pregnancies and with my first I suffered SPD (symphysis pubis dysfunction) and she was back to back, he said the pain may not be the failed fusion but sacrialic joint dysfunction so now I'm waiting for a brace which I have to wear for 3 weeks and will determine what joint needs to be fused.

      I'm now thinking it's possible all this time it's been my SI joints because Iv been suffering horrendous sciatica down both legs and thought this was my back but the pain I have in these joints Iv just thought was sciatica.

      So Iv done research and lumbar fusion can cause SIJD and untreated SIJD can lead to lumbar problems, there's a possibility I could of had the wrong surgery from the beginning as I have never been pain free and the first 2 years after surgery were the worst having to learn to walk again but later on I put this down to not having any physio post opp, hope this info can help others with lower back pain, please check your SI JOINTS!! 😊

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