Three months since I got a bionic neck

Three months ago I was in hospital feeling pretty good — the surgery had worked, I could feel my arm and I had come round from the anesthetic better than I had felt in months. In fact although I had some bad days, some tired days the next few weeks were all better than I expected post surgery.

Then I started to do things. Simple things like carrying a bag, going shopping, making tea (using a travel kettle) and driving short distances. Turns out my muscles in my back are in a bit of a mess. Depending who you talk to it may be that the muscles are damaged and healing but it may also be the nerves in the back recovering and growing back. Everyone says it is healing. Problem is it is taking a long time. I started physio 2 weeks ago – the first 2 sessions were with a private physio who did some soft tissue massage and gave me some simple exercises and then I saw an NHS one last week who gave me similar exercises. These will loosen the muscles in my neck and along my shoulders as they are currently very tight and probably the root of my pain. I am also doing rehabilitation swimming once a week which is helping too – even though I basically just float!

 The pain is mainly in my trapezius muscle which as you can see from this image is basically all over the back. It is probably coming from my neck. The muscles round my waist which are hurting are ones which you use when you lift your arms – they have probably been taking some of the strain whilst my trapezius is healing.

The best way I can describe the pain when it flares up is like a complete over reaction to the action I have done (often I can’t tell you what it was). It burns, it goes from no pain to agony in no time and there is very little I can do to stop it as there is very little warning when it is at its worst.

I have had days when I have managed to manage the pain but there is no real pattern to why that is.

I do think on the whole I am recovering from the bouts of pain better and quicker but on Monday I drove to see one of my best friends. She lives about 20 miles away and it is a drive I wouldn’t think twice about normally but by the time I had returned from her house I was in so much pain that despite taking diazepam, declofenac and co-codamol I couldn’t lie on my back, I couldn’t sit or stand. Even the pressure of a hot water bottle was too much. In the end I managed to find a position in my side where I was pain free but once I moved the pain started again. The pain hurt on my shoulder blades, my neck, down my back and round my waist. Breathing even hurt. Eventually after another diazepam and Alan coming home and rubbing some tiger balm in the pain was managable but I felt like I had gone back a few weeks to the pain I felt after eating out. Two days later and it still hasn’t totally eased. It feels bruised, burning and to be honest I am fed up. I want to go back to work, I want to be able to sit without it hurting, I want to be able to make plans and not have to cancel them. I don’t want to spend a week recovering from pain.

But whilst this week has been very painful on the whole things are improving. On top of the pain I was diagnosed with vitamin D deficiency. I am now taking vitamin D pills and sitting with a light box which have definitely helped. Not feeling so exhausted or achey helps focus on the back as the only thing to recover from.

So, onwards with the physiotherapy and trying to manage the pain. Second NHS physio is next week.

Update – 3.5 weeks after cervical spine surgery

It is now three and a half weeks since I had my surgery on my neck. Compared with all the drama of the jaw surgery this has been pleasingly uneventful. I have had some days where I have been in a lot of pain and others where it has been sore but not excruciating. It can be a bit disheartening when after a few days of progress I find myself exhausted and unable to do anything but I am just going with it.

My body has been through a huge trauma, I have had metal attached to my spine and my throat cut open so it is hardly surprising it hurts! I need to remember that though in pain it is not as sore as when I came out of hospital. Then even standing to do my teeth hurt and I could hardly be hugged. As my mum pointed out they don’t sing you off work for 2 months if they think you will be ok 2 weeks later. Also my grandad died on the 1st December which has been emotional so some of my sleeplessness is probably connected to that as much as the operation. Operations and deaths are both fairly stressful! But my grandad was 94 and what has been lovely has been talking through memories with my mum. If I make it to 94 and people love me like they loved him then I will have done well. It is also useful to remember that it is the little things that you do with people that people remember – my favourite memory is eating an ice cream one father’s day. 

I have been really impressed by the speech and language after care – they have phoned twice to check how I am getting on. Luckily I haven’t suffered too much with loss of swallowing or my voice. It sometimes hurts or I get breathless if I talk too much and sometimes eating is tiring but it’s not too bad compared with only eating mush with the jaw surgery!

I think the hardest thing about all this has been not being able to do anything. I can’t lift a kettle so can’t make myself tea. I can’t drive so rely on other people to take me anywhere (I don’t have the energy to walk too far). When I go shopping I can’t carry anything so my parents or friends or Alan have to carry everything. I feel so self conscious walking along side some one else carrying bags of shopping when I don’t even have a hand bag! When I have carried something  light sensibly in front of me at home it has hurt so I know I shouldn’t do yet. I feel like I need to wear a sign that says “I had surgery on my spine. I am not lazy.”

The surgery has worked though – I no longer have the numbness and pain in my left hand plus the numbness in my face has gone. Weirdly most of the post-op pain is in the right hand side of my back and shoulder. I have no idea what they did to me when I was under but my shoulder wasn’t very happy!

Today I am writing this at home in Epsom. It was one of my aims to be home this weekend and I am glad to be here – not least as I can spend time with Alan. I am heading back to Eastbourne on Sunday, we have my grandfather’s funeral on Monday but also I get to see my friends and family. Not being able to drive means I would be quite isolated up here in Surrey. 

One of the things that came out of my jaw surgery was realising what amazing friends I have. I have again been reminded this time, all my lovely visitors and cards have confirmed that I am very lucky. 

Of course one big thing has changed since the jaw surgery, this time I have Alan who has been an absolute rock, even humouring my more outlandish wedding suggestions. Pinterest and wedding blogs when you have a lot of time are dangerous …

Day 4 – ouch

Today was the day I had thought would be the earliest I would be discharged. I am still rather amazed to have been discharged so quickly but I really think the key was the anaesthetic. All my other operations I felt groggy and sick but apart from a little low blood pressure and feeling faint in Wednesday morning I don’t feel too bad. Tired yes, but then I have had major surgery but not that horrible wooly feeling.

All the pain, numbness and weakness on my left have gone which has given me a huge boost as I have had acute pain for weeks and on and off for months. My right hand side is in a lot of pain though, they obviously threw me around a lot. My neck is also sore, i guess the metal they attached to it probably explains that. All in all it feels like my back, shoulders and neck are spasming and settling down. My swallowing is still sore but I can eat (I just had a chip). It is all a bit nursery food like but better than expected. I get tired talking for too long too especially on the phone.

My scar is looking better every day, it was a bit tight this morning and my mum thinks my neck is a bit swollen but I think I have got off lightly.

All in all I think I was expecting such awful side effects, worse than the jaw surgery that the psychological boost of not feeling like hell on earth has been the best medicine. I suspect when the drugs wear off and I start to do more the reality of the operation will hit.

I am currently having regular naps and not doing much but hopefully at some point next week I will leave the house …

I had to have a phone appointment with one of the doctor’s at my GP’s surgery today to get signed off properly. I have been signed off for 2 months as per the surgeon’s instructions. The doctor seemed very surprised they operated on my neck. It’s moments like that that made me realise this was a big deal. I feel I can now really relax and focus on my recovery.

Home sweet home

In what appears to be record time I have been discharged from hospital. I don’t know if it is luck, because of all my experience of operations or because I had a great surgeon but I am writing this sitting in my parents’ living room less than 36 hours after I had surgery. Even the most optimistic people on Monday said I wouldn’t be out until Friday.
Here is a picture of my wound:

It is held together with glue so no stitches to come out. I think this is amazing!
My surgeon said that when he went into the disc it was worse than the MRI scan had shown, which explains why it had been so much more painful recently. It goes to show it is worth listening to your body.
I have been given a list of things I can’t do for 6-8 weeks:
Carry things
Drive (I can’t drive until signed off by doctor)
Exercise other than gentle walking

Over the next six-eight weeks
Slowly build up activity
Keep gently moving my neck left to right, up and down
Build up my swallowing – currently I can swallow but it feels sore. This should ease but to help it I am back on that familiar diet of soft smooth foods.
Be careful talking. My vocal chords have been bashed around in the operation.
Listen to my body and rest as much as I can

Hopefully it will be onwards and upwards but I have been warned the next few days will be very sore and I will continue to have some pain for 2-3 months whilst it all settles down.

My right hand side (not the side with problems) has been bashed around and is very painful, all the muscles are sore, spasming and burning but they will settle down. My left hand side which has been so horribly painful currently feels amazing (I can feel my little finger for one thing!).
The most amazing thing is my face. There was no reason to be sure of a correlation between my facial numbness and my disc but I can feel more than I have done for almost 3 years. I can even chew on that side. It will take a while to fully come back but it is on its way.
I am due more painkillers so will sign off for now. Thanks to everyone for their good wishes but especially Alan and my parents for looking after me and each other.

Surgery and cherry morphine

The surgery went really well. I am feeling good. Lots of muscle pain and swallowing non soft foods is bit painful (although eating soft foods is not something I am a stranger too!). My throat feels like I have a bad bout of laryngitis and I sound very husky but that was all expected. 

I have a great cut on my throat which is about 3 inches long and looks very much like a pirates score. Maybe I’ll make up some swashbuckling tails whilst I am off … 

the most exciting thing about the op was that for the first time in almost 3 years I can feel my right side of my face. I can even chew. It isn’t perfect and has faded a bit but this is a good sign and not even the reason  I had the op. The pain and numbness on my left is currently gone. It is still a bit weaker but that will improve.

 

Today’s the day

Have woken up on surgery day. Trying to keep relaxed and not worry. After a bad night’s sleep last night – hospital is very noisy I am trying not to think about the prospect of the rest of the week. Hopefully I’ll be on super drugs and ignore the noise. The staff here are lovely and kind which is very reassuring.

Alan will be here soon until I go down, so glad they have let him come in. Yesterday he was amazing at keeping me calm and making me laugh. He keeps saying my new neck will turn me into giraffe girl. He also reminded me of how much pain I have been in and that the alternative to surgery would be a life on painkillers with all the side effects plus the chance I’d become a hunch back. More Yoda than inspector gadget.

Am now watching BBC News and waiting … 

Neck Surgery

On Monday I am going into hospital and on Tuesday I am having an operation to replace one of the discs in my neck. This is because it has ruptured and has been causing me considerable pain. It may or may not be connected a whiplash injury I had at 19, that probably weakened it but it may also be a genetic weakness.

At the moment it looks a bit like the one on the right:

To do the operation they will have to cut my neck open from the front, move all the bits in the way out of the way (windpipe, oesophagus , larynx …) to get to the disc. This means that amongst the side effects I might have difficulty swallowing and my voice might become a bit hoarse. I’ll also have a nice scar. I won’t go into the more dramatic side effects because I am trying not to think about them! Since the jaw operations I am all too aware that sometimes things don’t go according to plan. I still have no feeling on the right side of my face and can’t use that side of my jaw to eat because my brain just doesn’t know it is there. All I can say is that hopefully all my surgical complications came with that operation!

The spectre of that surgery is definitely on my mind but luckily I know of several people who have had disc replacements and are glad they had it. I know more people who had complications from jaw surgery so on that non-scientific evidence I am feeling reassured. Plus despite all the problems I had with that operation I would have it all done again for the benefits!

I am going to be in Hurstwood Park which is an amazing neurological unit in Sussex and the care there is reportedly amazing. The hospital stay will be 3-5 days and then I will be going to my parents’ to recuperate as they are around all day, my friends live there and my doctor’s is nearby. Alan will be there as much as he can be. It will be hard not seeing him every day but we have our wedding to look forward to and it is important I am recovered for that. I know from my jaw surgery that for me being close to friends is important as I need that social energy or I will get depressed (I also need a regular supply of tea and people to make it for me). Unfortunately Epsom is a long way from my potential tea making visitors.

I am nervous about Tuesday. It is a big operation. Unlike the original jaw surgery which was to prevent future problems rather than solve current ones this is to solve a condition which if I am honest has been pretty debilitating. I have hardly had a day since Christmas where I haven’t taken some sort of pain relief. The good thing is that if this goes well I won’t be in pain for our wedding and I won’t have to miss out on things because of the pain!

Maybe if I am really lucky I will give me an Inspector Gadget style neck …

Returning to work

Tomorrow I head back to work. With annual leave it’s 5 weeks since I was last there so it feels a bit weird especially as some major changes happened whilst I was away. Unlike last time when I was returning to a job where I had only been for 6 weeks and felt like I didn’t know anybody this time I am returning to some wonderful friends but only for about 7 weeks before I leave for pastures new which does give me mixed emotions. I am heading to an amazing new job but leaving behind colleagues and friends who are really important to me.

My mind certainly thinks I am ready to go back but my body isn’t so sure. Yesterday I popped into Brighton and did a bit of shopping and cake eating with Jo. Normally this would be absolutely nothing  but by the time I got home I felt like I had run a marathon (a few weeks ago I had a fantastic day doing much the same thing in Brighton for hours with no tiredness to be had). It’s a tricky time in recovery, emotionally and mentally I need to get back but physically I need to take things really carefully. I hate feeling tired. My life is normally pretty busy and I really resent not being able to do everything I want to do. I feel a little like my life has been paused for the last few weeks and I am a bit impatient to get on with things. I know that I will win this mental battle and in a few weeks this will all be a distant memory. This blue feeling I have will go too as I get busier, hopefully unpause some things and begin to feel less tired.

My jaw is quite painful as the nerves come back to life, sometimes tingling, sometimes shooting pain, sometimes numb again and sometimes it itches inside my bone but all that means is it has worked. I’ve come to terms with the fact I probably will always have numbness on the right of my face but I am so glad it has gone from the left.

My advice to anybody getting ready to go back after surgery is pace it, minimise stress if possible and before you know it you will be better but listen to your body – if you need to stop then do.

Brighton – taken when I had a little more energy than I do today!

 

Surgery Success!

Today I went down to the hospital to see my surgeon and orthodontist and it was great news – the surgery I had last week was a success. Yay!

The surgeon thinks one of the screws wasn’t quite flush and for some reason the nerve moved (which is about the width of a finger and between the bone) slipped and nudged it. I think it was connected with everything still settling down. Anyway now the screw isn’t there the nerve is coming back to life. It does feel odd, sometimes very painful, sometimes tingly and sometimes numb again but it is definitely recovering. I’ve been told I no longer need to wear the braces at night so it really is all over.

This is what I feel like doing

I can’t begin to explain the relief I feel about this. Since I completely lost the feeling in May I have had it hanging over me, wondering when the operation would be, wondering if it would work or if I would never feel my bottom lip (and never feel a kiss properly – seriously this bothered me a lot) and then the anxiety beforehand remembering how horrible it had been after the first operation (it’s been pretty grim this time but not for as long). I think it is safe to say that for the last 3 months  I haven’t been completely relaxed (well probably since the first operation but this has been the worst) but now I can focus on recovering from the operation and moving on with my life.

I have been reminded over the last week how unsuited I am to being ill. Being ill makes you miserable, you can’t go out and you have to rely on other people none of which I am very good at. I’m not quite ready to paint the town red but hopefully next week I’ll be back in my own flat which will be great. It’s still tiring doing anything and I haven’t yet got the energy to even concentrate on a film but I can assure you this state of affairs will be changing. There are things I want to do, places I want to go and people I want to see.

Thanks again to everybody who has thought of me, texted, emailed, sent cards, visited and tweeted over the past week (and before that too). It means a lot.

I’ll post an update when and if I have news.

Third time’s a charm … Surgery number 3

Three (Photo credit: Joe’s-Photos)

On Thursday I had my third operation on my jaw to try and restore feeling into my left side jaw and  bottom lip. I was incredibly anxious about it– something which itself was unnerving. I am generally quite optimistic and positive so was quite thrown by these feelings but pleased to say that anxiety was misplaced.

The surgery went well. Before my face swelled again I believe I felt my lip and certainly the pain I am in suggests that it did its job! I have loads of stitches inside my mouth and one on the outside. I haven’t bruised yet and really look most like I have mumps. It hurts to smile and laugh but that isn’t stopping me trying. I hate being miserable.

I reacted badly to the anesthetic – oxygen and steroid injections were needed. I was kept in until Friday lunchtime but unlike the first operation the ward I was on was pretty quiet so I did manage to sleep. Also the morphine probably helped knock me out (berry flavoured shots of morphine are quite something).

I have to say that being ill in the summer isn’t the same as being ill in winter. Back then I didn’t feel I was missing out, everybody was a bit miserable and stuck inside but at the moment I feel that life is very much happening outside and I can barely move from the sofa. I want to be, enjoying all that is enjoyable about being in summertime Britain. But the texts, messages and tweets are cheering me up – thank-you. My hospital visitors were most appreciated and I am looking forward to more visitors this week – don’t let the fact it hurts me to laugh stop you trying to make me laugh if you are coming. Talking is also a challenge – it hurts to talk too much!

Thanks again to all the great staff on Glynde ward and at the DGH – the NHS at its best!

One thought keeps occurring to me – how did Kate Walsh (the UK hockey captain) manage to return to playing in the Olympics so quickly after breaking her jaw? Seriously I am struggling to sit upright for more than 20 minutes!

In the tradition of the blog I shall say what I have been eating … soup (in this weather), slimfast, muller fruit corners, ice cream and bananas in custard. It hurts much too much to chew but hopefully it will heal quickly. I can drink tea though!

No photo – just imagine me with a swollen jaw.

I am back at the hospital at the end of next week. I might update before then depending on energy / anything interesting happening!

Chris sent me this to cheer me up – thank-you!