Thank you runawaycerbera…

I am writing in response to the fabulous post in ‘comments’ by runawaycerbera on my last post ‘my husband stabbed my leg!’ She has spoken about her own experiences with backpain in such detail, I felt my answer to her was so long and in turn detailed that it should be written for people to easily read. Maybe they will be more aware of how serious a lumbar disc prolapse can be, and what backpain and nerve pain might mean long term if we don’t address it, which neither of us knew before.  Luckily in runawaycerbera’s case it was not too late but for many people it is especially if they experience Cauda Equina Syndrome which is a serious form of nerve damage that can leave you with permanent parasthesia if you don’t get it treated straight away. Check out the NHS website for details if you need more info, it is a really helpful site.

I read everything runawaycerbera has said about the debilitating back pain and the fog it creates and it sounds just like me! I had the caudal injection into my epidural region of the lumbar spine in March, to stop sciatic nerve pain, which luckily for me worked, altough for only or two weeks and was very painful for days afterwards but at least it was not excruciating to go in, just a bit humilating with butt in the air (not even a friday ;-). I was told by neurosurgery team this injection is too random and often goes wrong and is rarely accurate enough to do good. Too late after it was done, although the osteo/gp who administered it advised it was 50/50 success. Funnily the numbness and pain I now have down my left leg is different to the pain I had in my right. The pain shifted once I started physio in August (yes it took that long to get a referral to physio) and started the intense exercises recommended by the spinal pathyway physiotherapist. I went from stooping badly and pain in the right leg, to standing straight with intense pain in my buttocks, thigh, hip, leg, foot. The prolapse is central so I suspect it has shifted in it’s prominence/increased it’s prolapse, as does the spinal pathway team. Or maybe another disc has prolapsed, that is quite common once one goes I have heard.

I so hope I don’t suffer as runawaycerbera  has done, with the bladder problems and in agony for so long, but I have had issues with ‘other areas’ that has been ignored and I am not hopeful I will be spared any of the anguish she has experienced. I was told by many people in the last few months, that I should have gone to A&E at christmas and again in June, instead of accepting that any movement would make me cry and that was ok. The emergency GPs felt it was not that bad, but they didn’t physically see me. If/when it happens again (it is very likely I have been told by the spinal pathway team) R and I have agreed, no calling out of hours doctors for more diazepam and extra tramadol or codeine, I will go straight to A&E.

I just feel that as I am walking and not in the serious acute phase, the medical teams seem happy that there is no longstanding damage. I worry that they will wait untll it is too late before it is sorted. It is not healing itself. It is not getting better. I am just managing the pain better by avoiding living my life how I want, and by taking a lot of drugs. I agree with runawaycerbera that I am not sure how much of my tiredness is drug related and how much is that I am so ground down, yes a lot of it is the drugs, but much of it is not. Like she said, I hurt so often, I don’t think I realise how much anymore.

I am very scared that I am never going to be me again, that I am never ever going to see an end, and that even the brief periods of relative pain-free existance is just a short term until it goes again and this is how I am going to live my life, in fear of the most horrendous agony I have ever experiened returning. It is worse than my experiences of childbirth and I say that having given birth to my son with only entinox as relief and having had a ventouse delivery with my daughter. I simply cannot bear the prospect that my once active life has disappeared forever, that my children see this shell of who I really am, that this is their mother. This is not who I want them to see as their mother, it is not meant to be this way for them.

But runawaycerbera you have given me some encouragement that it won’t be forever, that one day I may find someone will listen and remove the fucking thing. I will, without a doubt being making a trip to A&E at some point in the future. I hope like you, it is not too late when that happens, and the nerves has not been permanently damaged.

ok, that was a lot of me there. an outpouring shall we say! phew. thanks !

3 thoughts on “Thank you runawaycerbera…

  1. I am so happy I have given you some encouragement and I hope your pain will be over soon. My surgeon said my disc was protruding 2x outside of the space and a large piece had broken off and was floating around wreaking havoc. Luckily I only had that week in hospital unable to empty my bladder so no permanent damage done but to be honest even in the taxi on the way to A&E I thought about turning back because the pain had gone from a 9 to an 8 – I was just so accustomed to pain but that’s not normal, an 8 is still too much pain! I was so sick of being fobbed off I told them it was a 10, and I’m so lucky I did or I could be sitting here with a catheter bag at my side.

    It saddens me to read that your pain became worse after physio, there seems to be this attitude that we will wither up and lock into the wrong position if we don’t keep moving and I don’t think this is true unless perhaps you are over 60… I always found the pain to be less if I had spent a day or two stretched out in bed, the more I moved the worse the pain became. Maybe your body was protecting itself and over compensating for the prolapse by making you stoop.

    I definitely have the fear you speak of but it was worse while I was actually in the midst of it, I am a different person to the one I was before but it doesn’t bother me because the pain is gone! Nothing seems terrible or insurmountable now that I can think somewhat clearly. After a discectomy you have a 80-90% chance of Never having a problem with that disc again. The odds are in your favour. All I could think of while I was going through it was that I would be suffering forever, now that I have had a blissful few weeks without nerve pain I am not afraid of it anymore.(knock on wood) What you are going through is the worst it’s going to get, it will get better, having the neurosurgeon cut a hole in my spine and separate the muscles was a walk in the park compared to what you are suffering now. Please take yourself to A&E soon, they cannot continue to ignore the numbness in your legs, a dog would be treated better than someone with back pain. They can’t see it or feel it but you have been suffering for so long that they have to help you!

    Best wishes and good luck x

    • that is quite shocking that it was so bad. did they manage to get the bit that had broken off or did it break up into your bloodstream/spinal cord? i have heard that can happen…

  2. It is shocking, I am so lucky to have no lasting damage. I do have backache but after the nerve pain it won’t stop me having a normal active life, I will just have to tailor my activities to low impact exercises and accept that I won’t be able to do everything and will sometimes have to rest. While I was going through it that seemed like the end of the world but now it seems a very small price to pay, I can still walk and work (although will have to retrain in a less active job) and go out for dinner etc.

    Anyway in answer to your question they did manage to remove the broken piece, it popped right out apparently. Your body can sometimes re-absorb any broken pieces and I think that’s why they tell you to be patient and wait for your body to heal itself, however not every Dr believes this happens…

    Treatment really seems to depend on the Dr you see…

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