"Waiting For Spine Surgery"

I first have to say I greatly appreciate the NHS, the care I have received from nurses when having a procedure in hospital has been wonderful. But it isn't working well in respect of people being seen and treated in good time in a lot of circumstances. I feel to keep numbers down, people are sent back and forth to other services, sometimes unnecessarily to turn the clock on and off to make it look like people aren't waiting as long as they actually are.

My story 'in short'...

I have suffered pain in my cervical and lumbar spine for over 10 years combined. I was diagnosed with a small annular tear in my lumbar spine with a small central disc protrusion at the same level, and a disc bulge with nerve impingement in my cervical spine in 2011, at that time I was advised to see pain management and go down the conservative care route, which then I was happy to do.

My symptoms got worse year by year, and I have tried everything to live with the pain, but now I have such radiating pain down my arm to fingers that I struggle to use my left hand most of the time due to the pain. I also have muscle weakness in my left arm leaving my muscles feeling fatigued. I feel off-balanced when leaning forward, bending over, or in wrong posture for any reason. I have a constant blood rushing sensation in my neck, this goes to my head and hurts, then I feel I might fall over, and have done twice only recently. Brain scan was all normal, and I just feel it is my neck which is the problem, but I haven't always been listened to. I wonder if an artery is restricted in my neck, or the disc bulge/s get closer to my spinal cord in certain positions which leaves me off-balanced. These are symptoms which never go away, and ones I cannot live with. Although my scans now show 3 disc bulges, an osteophyte which does I feel prevent normal neck movement due to the way it catches, I'm still told my scan looks ok, and my symptoms don't match the pictures they look at.

In my lumbar spine I have constant pain, I struggle to sit and when I do sit for any length of time I get severe calf cramps. I also have a lot of strange feelings in my legs and feet from what I can only guess is nerve sensitivity when the nucleus pulposus leaks from the disc and irritates nearby nerves. I say guess, as doctors won't even discuss this with me, I'm just told it doesn't look that bad on the MRI scan. Yet for me, I have not been able to do anything other than walk since the pain got really bad, I struggle to sit any length of time and feel I want to go to bed by 8pm due to the pain. I lie on the floor to watch TV in the evenings, and when I do go to bed, I constantly wake up with severe muscle spasms at the bottom of my back. I can't do normal things that others can do like travel, cycle etc.. but all this is apparently acceptable? I don't believe this disc tear will heal after so many years, and given that the pain is only getting worse, I feel it is a ticking bomb.

My symptoms are severe, but my scans do not show this. So I have had to see everything from the perspective of the consultants and radiologists involved, but I don't believe they often see it from my point of view. I'm only in my early 40's, lost so much time already. I can't even trot across the road due to the awful jarring pain in both my cervical and lumbar spine, its like being really elderly. I am in spasm constantly which is debilitatingly painful. I have only ever been scanned lying down, and feel it would look different if I was scanned sitting, or in flexion and extension of the neck. I have mentioned this previously as they say they cannot see why I am in such pain, yet the idea has been dismissed. I know for a fact not everything can be seen in an MRI, surgeons worldwide have to sometimes look outside the box and try other methods of investigation, like listening and believing the patient for a start. One surgeon said your symptoms have to fit in neat boxes, and yours don't quite fit..so it feels to me the surgeon can quite simply can ignore my very real symptoms and let me be someone else's problem. Its been harrowing for both me and my husband going through all this for so many years.

It has taken 5. 5 years to be put on a surgeons list for disc replacement surgery in my cervical spine. But the wait at this hospital is going to be up to 8 months currently. I was referred to this hospital in March, and the wait was just over 32 weeks to merely be put on the list, and me having this operation is not yet set in stone, I will have to have a CT scan (no idea when? ) as they are looking for facet degeneration, yet no one has thought to do this in the last few years under various surgeons? So I'm at week 42 now from referral, but I could be waiting until July to have this operation as I was only put on the list in November 2016. In all it could be 67 weeks before I have the surgery, or my life could be thrown away again at some point if they feel ADR surgery isn't an option. And without the chance of a better life, I feel I will eventually be housebound and very depressed taking medication which does not work.

I just don't understand why the process is so long given the 18 week time line the NHS gives. Also I was previously told I was a potential candidate for this operation almost 3 years ago at another hospital, and then this was taken away as an option to push me back down the pain management route instead. I even had an epidural injection in my neck as a process of elimination. I did not want this before, as I didn't feel the risk was worth a few short weeks of relief. But I agreed as I felt if it worked it would be an indication the surgery could be successful in illuminating the nerve pain down my arm to fingers. It did work thankfully, but only for a few weeks, then I felt much worse. And after going through all that I ended being discharged eventually from that hospital because the next surgeon I saw was against me having surgery at all. The trouble is when nothing else has worked for this long, and I can't work or drive, have lost my independence...I feel an operation is a necessary risk. I don't feel my life is any less or any more important than the next person, but I am being pushed to bottom of the pile all the time. I feel this surgeon who has very kindly put me on her list just might want to help me, but the NHS budget and other considerations make the process long and painful, and might even get in the way of me having this operation in the end..

I have already lost so much. Why would the NHS make people wait like this? It is so hideously inhumane. I know the surgeons don't do this to you to be cruel, but I think it's the bosses who make the decisions about care and waiting times are doing an awful job. If it was a member of their family, and they saw them go through what I go through, they would be furious and heart broken. I dare say they would be writing to their MP and stamping their feet very loudly, but quite frankly, often no one ever gives a damn.

I just needed to put this out there, it won't do anything for me, but it is all the truth and my ongoing experience with our much needed NHS.