Prof G’s final update

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Barts-MS rose-tinted-odometer: ★★★★★

Despite posting an update on my progress just a few weeks ago I am still getting daily texts, emails and social media messages about how my rehab is going. So here is my final update.

Once you are over the initial 4-6 weeks after polytrauma things, at least in terms of improvement, slow down a lot. So not much has actually changed in the last three weeks since my last update on the 22nd of January

I was clearly overdoing it and yes I admit you told me so. When I had an x-ray of my pelvis a few weeks ago the fracture of my left superior pubic ramus was not healing. Probably because I was doing too much exercise, which was causing some movement at the fracture site and non-union. I have been advised not to do anything that makes the pelvic pain worse.

I weaned my anti-inflammatories only to find that were masking a lot of my pelvic pain. As a result, I have dramatically cut down on my walking, stopped using the exercise bike for cardio work-outs and I am limiting my lower limb exercises to those that aren’t painful. 

Things were going well until I volunteered to be a pallbearer at our friends funeral on Monday; the additional weight-bearing strain on my fragile pelvis has made my pelvic pain a lot worse. So much so that I had to restart my anti-inflammatory medication this week. 

The good news is that I am continuing to notice and improvement in the range of movement in my right or injured hip. I still have limitations with hip flexion and internal and external rotation of the hip. Any rapid movements in the hip, particularly flexion when the hip is externally rotated, is very painful. I have worked out that this likely to be due to activation and contraction of the pectineus muscle that is attached to the superior pelvic ramus where my fracture is. Could this be one of the muscles that are causing my fracture line to move ever so slightly and delaying it from healing? As a result of the pain, I now walk with a noticeable, albeit a slight, limp. In neurology jargon, we call this an antalgic gait. 

My major concern is whether or not I will be able to run again. I was told by my orthopaedic surgeon not to attempt running for at least 6 months, which will take me to May. I really can’t imagine a life without running, but who am I to complain when so many of my patients with MS have had to resign themselves to never being able to run or even walk again. I think I am beginning to understand the mental toll MS places on people when they realise their physical and mental disabilities are worsening. 

During the accident, I had a hyperextension injury of my left ring and middle fingers. This injury is now causing me a lot of trouble with swelling of the interphalangeal joints of both these fingers and the beginning of hyperextension-flexion contractures in these figures. I suspect the latter is due to an imbalance in power between my forearm muscles and the intrinsic muscle of my left hand. Yes, I still have mild weakness in my C7 and C8 innervated muscles of the left arm. The imbalance on power causing clawing of the fingers is a common mechanism that afflicts many people with peripheral nerve problems. The good news is that my muscle strength is returning slowly, particularly around my shoulder and scapular, for example, the winging of my scapular has almost resolved. I hope my finger deformities improve as well.

The most recent CT scan of my cervical spine shows my vertebral fractures are healing well. I am not using a neck brace, but still have stiffness and pain in my neck, particularly when I move it quickly. My stamina in terms of sitting and standing is improving and I can now manage about 6 hours before needing to rest my neck muscles. I have reclining chairs with headrests in both my offices at work and at home. Another reminder that you need to have resources, essentially money, to ensure you can return to work with equipment that allows you to function without too much pain. 

I am now back at work doing remote clinics, catching-up on teaching tasks and generally doing what I used to do, however, all at a much slower pace. My physiotherapist has adapted my exercise programme so that I can do most of my exercises, at least my upper body exercises,  in my office during the day and has truncated the programme to make it less time-consuming. I am still sticking to the programme in the hope I will get back to normal. 

My attention and concentration are still relatively poor. I am having problems tackling big creative writing tasks. As a result, I am not nearly as productive as I should be. However, things are improving and I feel that by being back in my office, without distractions, I am achieving a little more each day. Yes, I am back doing endless zoom calls.  

Overall my attitude remains positive; I still feel lucky to be alive without a major disability. I also realise how privileged I am to be able to afford private rehabilitation and to be able to purchase the necessary equipment for my rehabilitation. As ever I am grateful for living in a country where universal healthcare is a basic human right. The NHS is such an extraordinary institution, which most of us take for granted. I would urge you not to take it for granted; you only have to look around the world to understand why the NHS and its staff need attention and care. 

Finally, can I please make this the last update for the next three or four months? As far as my clinical and academic activities go I am back working full-time and want to be treated as such. You will find me saying no to a lot of things mainly because I have reset my priorities. If I ever do another update it will be when I am back running again, or not.

CoI: multiple

Twitter: @gavinGiovannoni                                              Medium: @gavin_24211

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

20 comments

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  • “I really can’t imagine a life without running, but who am I to complain when so many of my patients with MS have had to resign themselves to never being able to run or even walk again. I think I am beginning to understand the mental toll MS places on people when they realise their physical and mental disabilities are worsening.”

    I’m glad to hear your recovery is going well. For a couple of months you have had a similar experience to an MS patient after a bad relapse – it came out of the blue, left you dependent on others, affected your sleep and cognition…… the difference – but you had hope. You knew that medics (the ones that get patients better), drugs, physios and your own determination would get you back to doing the things you love. This hope (the hope of running again, being well again etc.) is robbed from those with MS. I’m glad you appreciate the mental toll this has on MSers.

    Best wishes with a full recovery. Perhaps your experience of recovery will push you to a greater focus on treatments that stop worsening in MS or actually encourage some repair. Imagine the job satisfaction you would get from an MSer who tells you they have started running again, or got back in the job market, rather than having to just document their downward spiral on their medical notes. I know you don’t regard the EDSS as a good measure of disability progression on the MS journey, but as an MSer it’s a route map to hell when you see where you are and where you are heading next. Time is brain and it’s now time to stop progression (smouldering MS).

  • So much of what you say resonates with my own experience of ongoing physiotherapy, which I have had since 2004 – both as maintenance hydrotherapy regime for an MS-damaged hip and as acute treatment for falls. As you say, how lucky to have had the resources for private treatment – I would not still be walking without a stick if I hadn’t been able to afford the sessions. The wheelchair is not yet in sight, but at the outset, I was heading that way. Getting to know your body (and I was totally without prior knowledge of muscles etc) has been critical in the self-management of MS and on a different plane from a neuro’s input. Neuro physio treatment targeted at the MS damage has given me insight to help me stay functional and I can’t think where or how else I could have acquired that knowledge. You’re right – one’s resilience is tested. Physio exercises are tedious beyond belief. I have found that physios generally have the same approach: hard-headed and quite demanding but always optimistic. They believe that improvement is possible and that if you persist in making the small changes they will add up to something bigger. They are unique.

  • Good to hear your healing process is taking a bit more of a priority than when you were focused on Bed25K. I wondered if you were pushing it, hence the swims. Sid’s self advocacy is pertinent here. Additionally, what you point out regarding free healthcare is too. It seems a fair assumption that the readers of Barts’ blogs appreciate our NHS, but far from a foregone one. Some of us love to complain.
    Your point about having the resources to back up free treatment in this country with private rehabilitation is well made. Sadly for many pwMS, work becomes impossible and incomes shrink. In these cases physio must wait, or may not happen in pandemic times. It’s the same across many trauma and disability contexts. I think of very disabled friends who struggle to access the extras that would improve their health. This because they are on benefit and without pensions, as they never had the chance to work or not long enough, or in a job where there was access to pension.

  • I so admire your tenacity and sheer determination to return to your normal functioning self – well done. I wish you all the best and I’m sure you will be running in the fairly near future.

  • Excellent summary. Keep it up! You are in charge of your new schedule of work and rest.
    I would not have let you keep your ring on. Finger swelling not helping. ? Compression glove might help?
    Best Wishes!

  • Glad you are getting better and better, despite setbacks. I have one note about your language. You say “ As a result, I am not nearly as productive as I should be.” As someone who has been living with disability due to MS I’ve been trying to change my language and thinking. There is no “should” — you are as productive as you are and there is no moral judgement in productivity. You are whole and good whether or not you can work productively. So I’d just tweak your statement to “As a result, I am not nearly as productive as I used to be.” That’s a true statement that’s a little nicer to yourself.

    I hope that there is running and lots of creative concentration in your future. And before that happens, I hope you are feeling good!

  • Keep up your rehab. There is light at the end of the tunnel. Also, take it slow and listen to your body. If you feel pain then stop before you do more harm that will set you back. If your ortho said not to run for at least 6 months that will push you back to August not May. Sorry to point this out.🙁

  • I am so in awe of your direct honesty and positivity. It is inspiring, and does not make us feel like desperados. We instead, like you, want to do all we can, and like you, things don’t always happen as they should.
    You have such an empathic, sensitive yet powerful mind, and we hold on to your every word. Not being on the blog for a while is good news… you are improving and soon I hope, will be back in your running shoes.
    Sending love and positive thoughts only

    • Echo Barbara with the additional advice to watch for the undermining of current status and progress that comes with the demands of being back at work full time.
      Anyone of us with MS could regale you with accounts of when we’ve operated to all of those: ‘this is a priority’ or ‘I’ll do my physio when I’ve finished this’ etc that results in us being knocked back.
      You have the added ‘burden’ of being in a profession where your attention to the health of others is imperative – try to allow for the benefit to others in a manner that isn’t detrimental to your own health.
      🤞 in six months time you’re running again or if not then enjoying speed walking at the very least!

  • Thank you for this final update. Very glad to read that your recovery is going is well as it is and I hope that eventually you will be able to run again. Stay safe and well. One day at a time.

  • Thank you for this final update. Very glad to read that your recovery is going is well as it is and I hope that eventually you will be able to run again. Stay safe and well. One day at a time.

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