SURGERY! (How Sad That I’m Pleased)

I am not going to moan about how much pain I am in today, or how slow the NHS system is. I am not going to complain that I have spent 18 months banging my head against a virtual brick wall to get someone to fix me. I am not even going to gripe about having to spend all day today at hospital, after a 9am neurosurgery appointment was late by 20 mins, and then having to wait 1 hour for an unplanned x-ray, having to wait for what I was told would be 2 hours in the planned assessment team, but turned out to be 4 hours. I am certainly not going to bang on about not being to go to work at all having told them I would be in at about 10:30am, or using up all my mobile phone battery reading mumsnet posts and not being able to call my husband to get me (had to use a payphone, how old fashioned is that?).

No. Not moaning. Because, I have FINALLY been put on my neurosurgeon’s waiting list for discectomy. Finally, someone has said they can do something to fix me. YEY! Ok, he has not given me guarantees, but the odds are pretty good though I think – 80/90% chance of an 80/90% improvement in leg pain. But, only a 15% chance of any improvement in my back pain.  That’s not so good, but I was expecting him to tell me something along those lines so not a surprise.

I liked this neurosurgeon. He was pleasing on the eye which is always helpful, and spoke to me, not at me. He was pretty honest, but was interested in my view about it all. I didn’t feel rushed and ignored like I have with so many other health professionals, a number on a list to be spoken to and ticked off/kicked out. I was expecting to be talked over and the decision already made; pleasantly surprised.

The recent MRI shows that the vertebrae of L5 (the top one of the L5/S1 section) is out of alignment, something called Spondylosisthesis – it’s sort of pushed forward over the top of the vertebrae below and this is probably why the disc prolapsed. He doesn’t know why this misalignment happened – could be injury, could just be the way my spine developed/a joint stopped working so well. The disc is now bulging into the nerve space, and there is still an annular tear which may well have been the shower curtain hitting my back (read my previous post about the theory of how the tear got there), but the disc would probably have already been bulging at that point and so an ‘easy’ target.

Mr Neurosurgeon said he would not normally enter into the idea of spinal fusion with a prolapse such as mine and right at this moment he is not intending to do so. He does not believe the success of fusion generally is good enough to put someone my age through that trauma, and that back pain itself can be caused by many many things and so fusing is too random. However, this vertebrae that is not in the right place, along with the fact that the entire rest of my spine is in perfect condition with little sign of degeneration, indicates that there is a large enough coincidence between me having severe localised back pain, my back ‘going’ regularly and the potential instability of the vertebrae. For that reason he is considering fusion.

So I have had some x-rays on my spine with me moving around in different positions (ouch!) to see if the segment is moving at all. Pretty undignified it was too, dressed in the silly gown with a gaping back, and having to reverse into the loo else show my butt to the very full waiting room.  If the segment moves, he will review his decision and consider fusing the vertebrae when he preforms the discectomy, if no movement, he will wait and try the discectomy first. If the back keeps going after the op and recovery (a good amount of time) he will fuse the spine. AND he told me how he would do it. OUCH again.

Recovery is quick for the discectomy – 4 weeks if I’m lucky!  If all goes well, I could be bodyboarding within 8-10 weeks – maybe even this summer!

Advertisements

Disability Living Allowance – Biting the Bullet

I have avoided applying for Disability Living Allowance for a while, despite many people saying that as my lumbar disc problem is so debilitating I should do it. There are a few reasons – I have felt a lot like a fraud, as although a lot of the time I am in so much pain I can’t function, I also have lots of days where I can. There are people in a worse position than me. I have also felt I would probably not get it, as so many people worse than me struggle to be awarded it. I have been aware of the negative press that people who receive benefits get, and know some people around me who might scorn at me claiming financial help from the government they might not perceive I need, as well, I have a job don’t I? The form is long and I have been worried I will get it wrong, not be taken seriously, and now, with the new changes next year wondered if it was even worth it, I am nervous about having a medical, as it will typically be on a day I can walk fine. The biggest deterrent for me has probably been, if I am honest, the continued refusal to accept this as a disability, and continued thinking it will go away soon.

But, it is clear now that it won’t go away, certainly not any time soon. It is clear that I am entitled to it, that I need it now and that I may actually be awarded something. Financially we manage ok. We are not wealthy by any stretch of the imagination, we have no savings, but we can survive on our income ok. However, my disability has started incurring financial costs, and there are many things that we can do/get paid for that would make our lives so much less of a struggle when I am debilitated like I am right now. And if we actually have to face the worst case scenario, my husband’s job could be at risk if he continues having to take time off work to care for and the children. Oddly, his employment is more at risk than mine right now.

So, how will Disability Living Allowance help me? It will pay for a cleaner to come in twice a week when I am unable to do anything, such as this week, when R is at work.  It will pay for take-aways or meals in a cafe, which I did on Tuesday as I could not cook or clean up afterwards, and for the children’s school meals when there is no time for R to make packed lunches and I can’t do it. It will pay for taxi’s to do the school run when R works and I can’t drive and for after-school club costs when I can’t collect them. It will pay for our laundry when I cannot use the washing machine. It will pay for some additional therapy for me such as the Alexander Technique, Bowen Therapy. Apart from these last two ‘luxuries’ we are now having to do, or should be doing all of those other things as well as paying for my gym membership which I have to keep going to keep moving in the swimming pool (some people might see that as luxury, but without out, I would probably not be walking at all now). I could actually also do with putting a handrail up the stairs and a chair/rail in the bath (can you buy tasteful ones?!) It is taking it’s toll financially now, not hugely, but enough to notice.

I had a good chat with the School Liaison Officer yesterday about Bella, my fears of how this affects her, what support is, or could be available and she talked at length with me about applying for DLA. She said I absolutely must apply and that I must not talk about how I am on good days, but put my worst days down. I said I would be happy with just the basic level and she thinks I might actually get a higher level than that because on my bad days I can’t even get to the toilet on my own, and that this is a real disability, and this is now really seriously impacting on our lives, to the point it is now affecting R’s job.

I really don’t know what I’ll be entitled to, if anything – care element? mobility element? who knows, but, what I do know now, is, I have to give it a try, as it is there to help people who are feeling the financial burden of disability.If anyone has any advice on how to complete the form, please let me know! key words to use, things to remember to include, what is not important, and any websites that can guide me, that would be so gratefully appreciated.

Spinal Surgery Update

That is an exceptionally boring title isn’t it? I will change it when I think of something dazzling.

I had my Spinal Pathway appointment yesterday. This is an assessment appointment to determine if spinal surgery is an option. I saw this same man, Mr P (he is a senior practitioner physio something or other)  in early August this year, and at that appointment he was clear that surgery was not an option based on my MRI results from May 2012. His view was that a discectomy (where the offending bit of disc is removed to free the nerve) would not help as the prolapsed disc didn’t appear to be touching a nerve, and that spinal fusion is a last resort, end game situation, where I am nowhere near yet. However, he also agreed things were not right, which suggested that the MRI is now out of date and things have moved on somewhat since May, and he would review this decision in two months (yeah right!). The deal was I did aggressive physio first to get me standing upright. So, I completed physio which indeed saw me standing straight again after much pain, but the result was also an sharp increase in sciatic pain and numbness and transferred largely from my right to my left leg.

After much drama with nerve blocking painkillers, getting past a GP who felt I should be able to continue as a Zombie for the rest of my life over spinal surgery, and over 4 months later, I was back where he promised I would be, in his Office, discussing my continued and worsened condition. And this time he had a completely different opinion, following intense examination and concluding I have calf muscle wastage and significant leg weakness due to what appears to be nerve damage. No Shit Sherlock! He is not exactly telling me something I didn’t know. But, I didn’t realise I had such issues with standing on tiptoes using my left leg – that explains I fall flat on my face when doing aeroplane pose after wobbling all over the studio first in Body Balance.

A full and frank conversation ensued, and some tears from me, him telling me that if sometimes peoplg go through a few years of debiliating pain and the good news is that by the time they 50, the disc will be so disintegrated there is no more pain and the vertebrae will (sort of) fuse on their own (I have heard differently but hey ho). But, Hang On a Minute I said. My daughter will not need to be taught how to ride her bike when I am 50. My son won’t need comforting with cuddles in the middle of the night when I am 50. If I carry on like this I won’t have a career left when I am 50, and maybe not even my lover to please.  I don’t want to wait until I am 50. I want to live my life NOW. Cue more tears.

So after dangling the carrot there and baiting me with my potential fate, he finally informed me that I am now a suitable candidate for spinal surgery, and following a new MRI, I should expect several different surgical options to be discussed, as there are two different factors to my back problem, one is neurological (nerve related) and the other is orthopaedic (bone related, or ‘mechanical’ as they refer to it):

1. Discectomy – to remove the prolapsed (sticking out bit) part of the L5/S1 lumbar disc, if it is indeed prolapsed (it could still be ‘chemical pain’ causing the sciatic pain and back spasms, but chemical pain is less likely to cause numbness).

2. Spinal fusion – to stabilise the vertebrae which keeps ‘popping’ in a similar way that a knee with damaged cruciate ligament gives way. He admits he cannot see another alternative to spinal fusion to fix this problem. Except. Oh Hang on! There is! After I questioned why we can get a man on the moon but cannot replace a vertebral lumbar disc, he announces that this can be done, and is being done, and on the NHS. But not at that hospital. He was extraordinarily reluctant to discuss this in detail, only saying it is as risky as spinal fusion in terms of success and complications. But, this is a whole other blog post that will be written.

3. Possibly (probably) both the discectomy and spinal fusion. As the problems with my back are two fold, one is unlikely to fix the other.

So I now need to wait for another MRI, sometime after Christmas, probably 5-6 weeks away, followed by 10 days for the results, plus another 2 weeks for the results to be discussed with neurosurgeon and orthopaedic surgeon. So, despite this progress, it will be another few months before I can even discuss spinal surgery, let alone be put on any kind of waiting list.

And the advice on how to manage my condition until then? Don’t Give Up. This man is wise.