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 However, he also agreed things were not right, which suggested that the MRI is now out of date and things have moved on somewhat since May, and he would review this decision in two months (yeah right!).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.

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Today I Read 350 Emails and Smiled A Lot

Last night my two-almost-three year old boy snuggled himself on my side of the bed. By the time I get to bed, he is stretched across the bed, but every now and then rolls over to the edge. I spend several hours tossing and turning only half asleep waiting for the ‘thud’ of him falling off the bed that is a million times bigger than him. By the time R returns from his late night out, Roo has been gently carried back to his own bed, eyes shut, head in my neck and as I tuck him under his duvet he makes a feeble effort to show his disapproval ‘i don’t wan go to my bed, I wan…zzzzzzzz’. 5:00am and he has climbed back between us. Next thing I know is Bella cuddled next to me hanging off the bed on the other side of me, talking non-stop. I figure it must be almost 7am due to her incessant questions and chatter. I glance at the clock after 10 minutes or so and find it is 5.45am. I am So Not Impressed.

3 hours and 15 minutes, two cups of coffee and a long shower later I am on the wrong bus going around the houses to take 25 minutes to drive what should be a 10 minute journey to work, for my first day after 5 weeks off sick due to sciatic nerve pain. It is a good job really as the other bus drops me outside The Hut where I would find it difficult to walk past without buying a Skinny Latte Extra Shot. That would be 4 caffeine shots before work and I am going to be wired enough anyway with the variety of painkillers I have taken with the first two, along with the lasting effects of amitriptyline from my nightly dose.

Wow! My office is bright! and noisy! By 10am my head is pounding with the lights, noise, and the 350 emails I have to read. I am not sure if this is the medication or just shock at being back at work after the relatively sedate time off sick. My boss comments that I am looking better than she has seen me for ages. Repeats this several times and says that the time off has done me good. She is trying to work out what is different. Make Up, I tell her. I am wearing make-up. I actually spent 30 minutes plastering it on in a way to make it look like I was wearing not a jot of make up apart from lipgloss and mascara, disguising the heavily medicated eyelids that even my thick framed glasses cannot hide and the dark circles and red blotchy skin. Well, it has worked I find out as several colleagues comment on how well I look. I am not sure whether that means I always looked rough before, or only when I was looking so ill with pain, but either way, they really do seem genuinely surprised that I look well. I decide on the latter and plaster on a beaming smile for every comment I get.

I sit on my old, alleged back pain specialist chair. This is not the one that was recommended by the back specialist assessment, the one that I later find out is going to cost £800+. This is the chair they have decided will do after all despite being recommended otherwise (I can’t figure out why they think this…). Except, when I sit in it and the pins and needles shoot from my left foot straight up my leg and into my buttock, my boss quickly changes her mind and 20 minutes later the approval for the new chair has been signed and sent off. But, they still won’t let me have red leather or an iPod charger. However it does recline. Bonus.

By the time I leave the office I am limping slightly and my head is pounding from the excessively fast-paced office, from struggling to focus on the computer screens, having to engage with people and on the whole being unused to Life On the Outside on my pain meds.

I am now watching Black Beauty with my children, tired but relieved that I got through my first day back with relatively little trouble and without falling asleep  or slurring my words in front of my colleagues. But I really must get myself some of those noise blocking ear protectors.

Shall I have a glass of wine to celebrate?

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 !

My Husband Stabbed My Leg!

I am taking a low dose of amitriptyline for nerve pain; sciatica.  I am 3 weeks in and it has almost stopped my back, hip, stomach and leg pain completely; it is working as it is meant to, pretending there is no sciatica. Unfortunately one side effect of amitriptyline is that my spatial awareness has gone out the window and I am constantly walking into things, causing bruises that have me hastily explaining to all and sundry that R has not completely lost his patience with me, and really, yes, I did walk into a Mother and Child Parking sign, while R howled with laughter in the car.

Talking of bad impressions. Reduced pain is great, but I am now left with constant pins and needles in my left foot, calf and thigh. Yesterday I was pretty sure I could sense numb patches on my calf. R walked into the kitchen and looked on in amazement as I sat at the kitchen table, casually tapping at my calf, foot and toes with the sharp point of the parring knife to check if I was right. However I learnt that you can’t check your own leg with any useful results.

Two minutes later, my slightly unconvinced husband was also sat at the table holding the parring knife to my calf. ‘just do it!’ I said, with my hands over my eyes to make sure the test would be accurate. ‘I am!’ said my husband, alarmed at how hard he was tapping my leg with the knife to no response.

And there is the confirmation. I have an actual numb calf. The nerve damage is being hidden by amitriptyline, the wonder drug. I’m not entirely sure what, if anything I am going to do about that. No-one medically seems to listen. What more do I want than the handfuls of drugs that turn me into a dribbling shell of my former self? I am not in lots of pain; the sciatica is under control, so I should be thankful. And I hope that the numbness was always there just hidden by the pain.

It’s not often that one can say their husband stabbed them in the leg without it leading to a criminal conviction is it?