11 years of pain - Would love some help/advice (especially with regards to Welsh health boards)

Posted , 2 users are following.

Hi all.

I'm 25 and have been suffering with a bad back for 11 years now. I've had numerous facet joint injections and have also had discectomys done at levels L4-5 and L5-S1 three times. Even with all these treatments, surgerys and hours and hours of physio I am still in agony to the point I'm now on 40mg of MST (morphine tablets) and I take 20 mls of 10mg Oramorph throughout the day, I'm also on 30mg Amitriptyline at night and twice daily have the mortifying task of inserting diclofenac suppositories.

My 'problems' are listed as: Disc bulging at levels C6/7, T7/8, T9/10, L2/3, L4/5, L5/6 and congential fusion at T10/11. The disc bulge in my neck catchs me sometimes but not enough to require treatment of anysort. My middle back issues cause sharp stabbing like pain that take my breath away as well as constant aching across my back and ribs. Then there's the lower back, L2/3 isn't causing too much problems at the moment (touch wood) but the lower levels are my nemesis! Constant pain, sciatica in both legs and very very sensitive to touch. The sciatica is ususally worse in my left leg but recenlty has decided to affect my right leg also, the whole boiling water down on the inside of the legs, the jumping and jolting twitches, the pins needles and numbness on the outside of my legs and both feet, and the pressure that I feel is enough to bring me to tears on a daily basis. 

As a result of these problems, the medications and the feelings of continuos lethargy has led me to give up work temporarily (which I thoroughly enjoyed and miss), make alternative arrangements for continuing my University course (which has killed my social life) and now I've also had to stop driving (which where I live, leaves me trapped in my house unable to get out at all). 

I live in South Wales, where choice of hospital doesn't exist and my local NHS health board over the past 5 months has refused me a MRI scan, twice refused further facet joint injections and now saying there are no consultants available for me to see. I just want to know how to see somebody that is actually going to do something. If anybody has information on spinal cord stimulation therapy or the pain pumps, I'd be very interested to hear about it. 

I should be grateful for advice or help on any treatments, home methods or knowledge of ways getting through to the Welsh health boards that I need treatment that anybody could offer. Just a conversation with people who are understanding or going through the same would be an enormous help too. I feel hopeless, and that nobody truly understands what it is like. These doctors that fob me off with tablets have no idea what it's like to actually live in this pain and I just feel that at my age, this is no life. I have no social life, am unable to even get out to meet people, no boyfriend or relationship and the last time I was sexually active I screamed out in nerve pain, and that was more than 3 years ago! How can they leave a 25 year old to 'live' like this. The infighting between the health boards is of no concern to me. This cruel treatment is a joke.

Sorry about the sob story, but I just don't know what else to do now. Please help me. 

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  • Posted

    I know exactly where you're coming from. Where I live in Scotland there is no Spinal provision within the local health board. I have to cross borders into Glasgow to get any Spinal help, apart from the Pain Clinic which is local.

    I was in a similar position 9 years ago when I couldn't get the op I needed due to me living in the wrong area. I went to my local MP who escalated the issue and within 3 months I had my op and life back. I'm now 3 ops down the line and still in chronic pain.

    I just sneezed a moment ago and screamed in pain and woke my kids up! Possibly the swear word that came out had something to do with it.

    You must not take no for an answer. Write to your head of local health board, MP, Health secretary for Wales etc etc till you get the answers you require.

    As you say they wouldn't leave a dog in this state! Fight for it as you will be left as you are if you don't. Those who shout the loudest get the stuff they need.

    PS all my issues are L4-S1. 2 disectomy's and a double ALIF 5 months ago. Also have DDD, Spondylothesis, and spinal stenosis. L3/L2 is on its way out as is L2/L1. Long way to go for me. Although, I am 44 so a bit ahead of you.

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    • Posted

      Not that your wife would appreciate this but I just really want to hug you right now. I'm not alone! Thank you for sharing your story too. How are you now after the fusion? Although it sounds like you may still be in awful pain with the other condiitons on top of it. It's really not nice is it?

      So my plan of action is to face the MP's or Health Secretary then. I don't think I could face the head of the board now, after being refused treatment so many times, I'd potentially lash out. I've just had enough of it all! My concerns for spinal problems is multiplied by the fact my mother is a tetraplegic, after being pushed into a swimming pool 20 years ago, she is completly paralised from the shoulders down, so you can imagine I'm petrified of ever coming close to being the same way. 

      I too scream out with every sneeze or cough. In fact nearly 2 weeks ago I sneezed while bending which put me in a right old state. I went to the GP who has said he'd put money on me rupturing a disc and that I need an MRI scan urgently. So I enjoyed a nice trip to A&E on Gas and air in the back of an ambulance, was told by two doctors that I'd be admitted overnight, ready for transfer to another hospital and MRI the next day so was feeling quite optomistic that I'd soon have answers. Well, next thing two nurses come in the A&E room, tell me I've been discharged and I was asked if I'd like them to call a taxi for me. But the story of my time in A&E at two different hospitals two nights in a row is for another thread! 

      I still don't know if I have a ruptured disc or not, and looks like I won't know for another 6/7 weeks, or was that the wait for the MRI still, I get confused. Maybe it's the meds! 

      I was offered fusion surgery too, once. In 2013 they were going to do the TLIF operation, then at the pre op check up decided I was too young for such a big surgery and came to the conclusion that third time lucky at the same level was my better option. I understand where they were coming from, but at the time I just wanted anything that took the pain away. For the first time in 11 years I have now finally been referred to the pain clinic, again as an urgent case. That was over 4 weeks ago already! 

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    • Posted

      So sorry to hear about your mum. That's tragic.

      If you get a good Pain Clinic it can make all the difference. I'm luck in that I know the Dr who is treating me, old sports friend. I still have to wait my turn but he ensures I get whatever treatment I need.

      The usual wait here is 12 week for Pain Clinic. I had a Ligoncaine Infusion 8 weeks ago that didn't work so it will be Spinal Cord Stimulator next.

      Please, don't give up. Keep battling to be seen. And if you don't hear anything from your letter, write another and another till they're so p1ssed off at you they do something.

      I'm 6 months post op next week. Still in a lot of pain, numb left thigh, numb right foot and nerve pain down left leg to my knee or all the way down when I cough or sneeze.

      Hopefully my surgeon will scan me again to see if something's out of place.

      People are good on here. Keep posting and people will respond.

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    • Posted

      Thank you, your advice has been great, I'll definitely be getting on the phone tomorrow, start with the local MP and see where that leads me. 

      I was looking into the spinal cord stimulator last night, they've not offered it or mentioned it to me yet, but a friend of a friend has had it done and the results are apparently phenomenal. I hope the lignocaine infusion is successful for you, I've heard that it works well too, but have also heard that it's not long lasting, sorry if this isn't what you'd want to hear. I can imagine though that like me you don't believe anything is long lasting until it actually happens. 

      If you would, please let me know how you get on with things. I'd be interested to hear how the IV goes and if a scan does show up anything.

      Take Care

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