Feeling desperate

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  • #47865
    Aurora
    Participant

    Hi everyone
    I hope you are all as well as you can be.
    I’m feeling in complete despair after I had a phonecall with my lovely GP this morning about my back to get more diazepam.
    I have compression of the descending right S1 nerve root at L5/S1 due to right paracentral disc protrusion. I also have moderate bilateral neural exit for foramen stenosis without overt neural compression. I also have a small synovial cyst at L4/L5 arising from the left sided facet joint which narrows and medically displaces the descending L5 nerve root without compression.
    Another GP in the practice had contacted my pain consultant and he said that I won’t be getting my six injections in my facet joint and si joint anytime soon. I’m stuck in bed due to the severe pain and don’t know how I can’t cope any longer. I’m on diazepam on top of my other meds as I have intense spasms
    In my back where my whole back lifts of the bed.
    I have a nuerosurgeon appt on the phone tommorow and praying he can do/offer something because I’m starting to feel my life isn’t worth living in this state.
    Apologies for the negative post.
    Xx

    • This topic was modified 4 months, 3 weeks ago by Aurora.
    #47867
    Joyce
    Participant

    Morning that sounds very much like I had up Until January this year including the cyst I then had decompression and fusion surgery and things are so much better. Sciatic pain has completely gone and back is about 80% improved. Why are you not seeing a spinal surgeon Can I ask?

    #47869
    Aurora
    Participant

    Hi Joyce
    My understanding is that neurosurgeons carry out the same procedures as spinal surgeons,
    X

    #47870
    Lc
    Participant

    Hi Aurora, sorry to hear your in so much pain, but as Joyce says this sounds as though the only thing left and to help is surgery, this state of pain will and does cause you depression and makes you the way you feel. have a chat with your neurosurgeon tomorrow and explain to him how you are and feel, and that no matter how much drugs you have it is not working and want and need something done to take the pain away ASAP. before you do something stupid, even if your not at that point, hopefully this will get them to act. lay it on worse than you already are not that you can get much worse. Let us know how you get on tomorrow after your talk with neuro surgeon. in the mean time try and keep your mind active by distraction methods like coloring pages or starting family tree, listen to your favorite music ect. things that you can do while laying in bed.I know this is harder than said but try to calm yourself and relax as best you can. let us know how you get on tomorrow , take care and best wishes, Lee

    #47872
    Aurora
    Participant

    Hi Lee
    Thanks for the reply. I want someone to do something but scared of having an op.
    My injections gave me a better quality of life and I can’t believe they have been taken away because of the corona virus. I’m so tired of suffering this way. I have other health conditions too which bring me down. I have not walked outside since March.
    I will let you know how I get on.
    Many thanks for your continued support.
    X

    #47873
    Lc
    Participant

    Hi Aurora, that is what pain does slowly nibbles away at you,then with added health conditions on top just makes it all feel worse. that’s why you got to work on a strong mental attitude. to keep fighting, at the end of the day just need to ask the question to yourself can I keep living in this state of pain or do something about it to make it a bit better.I found injections were short lived then didn’t work . anyway Good luck take care and best wishes,Lee

    #47874
    Aurora
    Participant

    Hi Lee
    Spoke to the neurosurgeon I’m not a candidate for an operation. He said only 10% of back operations for my condition are successful. That’s fact I haven’t got terrible pain in my legs means that an operation wouldn’t work. He seemed to be put off by all the other illnesses I have . I try to impress on him on my lack of quality of life . He said the injections that I normally get are the answer. In my case they work really well. It’s trying to get them which is the problem. He also said my disc might go back in and my stenosis you could call arthritis is wear and tear (I’m 41). Very upset and feel quite let down by lack of info and support.
    X

    #47875
    Lc
    Participant

    Hi Aurora, stenosis is the narrowing of the holes in the spine which your nerves pass through,and can aggravate the nerves. so as you have not got pain down your legs.then they obviously dont think it is severe enough, even if you think it is, In my experience true prolapse disks if bad enough do not go back on there own, regardless of how much physio exercises you do. so maybe he is worried about other health issues you have. the only thing then is to keep badgering until you get the injections if they seem to work well for you. but with the way things are at the moment with covid 19 it could be a bit of a wait I’m afraid. like myself I’m getting virtual consultations with pain clinic. at mo, as I have other health issues and they are reluctant to see me in person at this present time but hopefully see them soon.I understand how you feel by being let down and upset at moment which is very understandable. Do you do mindfulness meditation ,and relaxation and try other alternative methods to cope, as this helps me. I have been told by my pain clinic which is linked to st. thomas and Guys in london. that no medication will relieve me of pain and the only thing that will, is to be anesthetized from waist down which they wont do unless i was already paralyzed with no bowel /bladder control, and it would be un ethical to do that to me. so I just have to except that this is how I am and cope the best way I can, with everything I’ve learnt over the 23+ years living with pain. The hardest part is accepting ,dealing and coping with yourself. Maybe as things get a bit more relaxed with all thats going on with covid19 they might re assess you again in the near future if you ask and badger them. in the meantime keep in touch with this site we are all here to support each other , any questions about anything, just ask . I hope you find new alternative ways to help yourself through this difficult time, take care and best wishes, Lee

    #47876
    Aurora
    Participant

    Hi Lc
    Thanks so much for your reply.
    I have a physio massage lady I see whom I will be seeing as soon as we come out of lockdown here in Scotland.
    I’m sorry to hear of your struggles.
    I do my own version of relaxation and listen to books on tape.
    It’s just so hard to keep going when you don’t know when the relief is coming.
    X

    #47883
    Lc
    Participant

    Hi Aurora, That’s ok doing your own version of relaxation. I do the same. but at first used a guided relaxations/meditation/visualization methods and still use them occasionally when in sever pain, but generally can manage without, and by myself.I tend to mix all 3 together, but it does take practice , a lot of it. I hope you get the relief you need soon but in the meantime just need to find things that help you deal and cope with what is happening in the here and now. which is how I live not to worry about the past, thats been done and move on from it, and not to worry about the future as we dont know, your only surmising and sometimes that is not the truth ,about things. but here and now is what is happening and your feeling at this moment in time. as each moment of time is different,and pain levels differ to. it’s about coping and dealing with things now, that keeps you going as the saying goes with pain comes strength. and over time you will realize how strong each of us are.Hang in there and hope you get your pain relief soon. take care and best wishes,Lee

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