Thank you so much to Nicki who has shared her story of Foot Drop with us this week -
My name is Nicki, I am 42 & I have a left-sided foot drop. On 16th May 2013, after a week of intense back & sciatic pain, I woke to find that I could not move my leg from the knee & that my foot was drooping. I was referred to the acute orthopaedic department at my local hospital where I was assessed, sent for an urgent MRI scan & given my first AFO. I was told that I had a foot drop & that I would be seen by a consultant later that week.
I left the hospital that day completely bewildered. I didn’t know what foot drop was, I was scared, anxious & worried about the future. I was mum to 2 boys, I had a job, how was I going to manage? When I met my Consultant for the first time he explained that I had had a disc prolapse & that had compressed the sciatic nerve which in turn had damaged the peroneal nerve & that had caused the foot drop. He thought that the back problem would perhaps settle without surgery & suggested that we meet every week to see how things progressed. I was given an 18 month window for the foot drop to recover. I trusted his advice & went with the plan.
So over the weeks & months that passed my back pain recovered without surgical intervention but I was left with agonising nerve pain in my leg & the foot drop didn’t seem to get better despite the weekly physio sessions that I had. I tried everything to recover. I sought the opinion of a foot surgeon, I had nerve conduction studies that showed there was no nerve response at all, I tried nerve root blocks for the pain in my leg, I had an AFO custom made to help with my walking & confidence. But I still became really depressed, the life that I had known before was gone. I had numerous falls that made me lose my confidence. I had been so active & I was left a shell of my former self. I couldn’t do half of the things that I could before & I was struggling, really struggling.
A friend suggested that I try counselling as she could see that I wasn’t coping. I reluctantly booked myself in & attended my first session. I was convinced that I would be sat there the whole hour with nothing to say. I was wrong! I didn’t stop talking & went every week for 8 weeks. It did me the world of good to be able to sit and talk to someone who wasn’t clinically or emotionally attached to me. If you can access this I really would recommend it. It was suggested at one of my sessions that I see my AFO as a part of me & that perhaps I should give it a name. I took this advice and she is called Belinda! I don’t like her some days but she sticks with me regardless!
So fast forward to today, I still have the foot drop and have to wear an AFO. I have to take daily neuropathic medication to control the pain & spasms that I get in my leg but I am living my life & coping so much better than before.
I have just recovered from a really bad episode of back pain where I lost the little bit of strength that I had gained in my foot. I could feel that I was starting to slide into depression again but that is when I decided that I was not going down that route again & that I was going to speak out about what happened to me. I do not need to be ashamed of my disability and it is a disability. I have learned to never take life for granted & to not judge others as you do not know what people are going through. I have accepted the new me & what she can & can’t do. I rest if I need to & don’t fight myself. I enjoy my life again.
I want to make people aware of this this type of nerve injury. I just couldn’t find the right support initially & it was really hard at first. When I first set out on this journey someone said to me ‘Nicki you know it could be worse’. Yes it could have been worse, but at that moment in time it was the worst case scenario for me & I just didn’t want to hear that. If you are diagnosed with this please know that you have every right to mourn for the person that you were before. Know that you will find a way to move forward but it will take time. Be kind to yourself and try and find a way forward. You will start to enjoy life again it will just be a slightly different one from what you had before.
Nicki Fairchild - Sept 2019.
We are thankful to Lord Rennard for sharing his story about Foot Drop as a complication of Diabetes. Lord Rennard also discusses the use of an ankle foot orthosis to help with Foot Drop.
My interest in diabetes is long term and personal. My father was one of the first people to benefit from the development of insulin in the 1920s; he developed diabetes probably as a result of the shock he experienced having a leg amputated following injuries to it during the First World War.
Because of insulin he was able to live quite a long life for someone born in 1889. I was born in 1960, when he was 71. His survival for so long was testament to the effectiveness of insulin in saving lives and helping people to live with a condition that, until then, had been known to be fatal for thousands of years.
I was diagnosed with type 2 diabetes at the relatively young age of 34, almost 25 years ago. My lifestyle, related to my work in politics, was extremely poor for a long period. By the time that I was 45, I was on insulin as well as tablets. In my late 40s, I was warned that even the maximum levels of every form of medication available would not sustain me into my 50s unless I changed that lifestyle fundamentally. I have been fortunate to receive great support from the diabetic team at St Thomas’ Hospital. I am pleased that my long-term control, as measured by my HbA1c blood glucose level, has remained at 7.2 for my last three tests. It has been helped by changes in lifestyle, including those that have resulted from a GP referral for some physical fitness training (which I certainly needed) the acquisition of my Fitbit monitor and recognition that I needed to eat more healthily and consume fewer products filled with sugar which for many people is a very addictive ingredient.
My own poor diabetic control some ten years ago is probably responsible for the fact that both my feet now suffer from a condition called foot drop. This means that I need to wear ankle foot orthoses, known as AFOs, and, like all other diabetics, I know that I need to take great care of my feet. It has not been straightforward getting the right devices for them, and the otherwise excellent St Thomas’s Hospital was not very good in relation to Patient Appliances.
I was fortunate in that I do some work for the British Healthcare Trades Association (BHTA), a Trades Association representing the manufacturers of medical devices. When I was presenting their award for lifetime achievement last year, I met William Munro of Munro Rehab, whose brother Ken won the award. William helped me to identify Allard Toe-OFFs as the most appropriate AFO for my feet. Prior to using them, I was not walking well, and alternative devices had not proved to be so good for me. Without any devices, I had a few falls.
I also fortunate to be referred for specialist help to the excellent Christian Pankhurst at the NHS Bowley Close Rehabilitation Centre in Crystal Palace who provided AFOs and appropriate insoles.
As a member of the House of Lords, I speak occasionally about issues connected to diabetes. I took part in a recent debate about ‘flash glucose’ meter monitoring and how it is helping some people with type 1 diabetes to improve their control.
People with type 1 diabetes find it much harder to maintain good control. They need to test their blood with finger-prick tests eight or more times per day and can observe their blood sugar levels increasing rapidly or falling dramatically, sometimes without any apparent explanation. The emergency services are too often called out to assist someone who has collapsed, with some people thinking that they are drunk, when in fact they are suffering from a “hypo”. I experience hypos very rarely, but type 1 diabetics are much more vulnerable to them. Diabetes UK said recently that some 500 people with diabetes die prematurely each week. I regularly read distressing accounts of how more than 6,000 foot amputations per year result from diabetic-related conditions, many of which are preventable. If not managed effectively, poor diabetic control results in loss of sight, kidney disease and a much greater prevalence of strokes and heart disease. People between the ages of 35 and 64 living with type 1 diabetes are three to four times more likely to die prematurely than those without the condition, whilst those in the same age range with type 2 diabetes are up to twice as likely to die prematurely.
Sarah Read was a physiotherapist specialising in neurorehabilitation and in particular stroke rehab. She worked locally (Surrey), both in the NHS and the private sector, before she was diagnosed with Sarcoma, a rare and often aggressive type of cancer in 2015. She sadly passed away in June this year aged 31.
Sarah’s tumour was in her pelvis, and she had extensive pelvic surgery in March 2016. In order to remove the tumour her surgeons had to sacrifice nerve roots at L4, L5 and S1, which resulted in her suffering from loss of sensation and foot drop in her left leg. Sarah had a troublesome time accessing the splints she needed for her rehab through the NHS – this was despite knowing a lot about both her neurological deficits and the equipment available to her. Luckily, a friend and former colleague of Sarah’s was able to help her access a particular type of dynamic splint. This greatly improved Sarah’s quality of life and last year she completed the Race for Life 5K.
Sarah loved her job and was passionate about helping her patients, and with this in mind one of Sarah’s friends has set up an assessment day to help give others suffering from foot drop the same opportunity Sarah had in accessing equipment. More information is available here https://www.facebook.com/events/241361929911595/
Finally, below is a video link about Sarah’s Story:
Thank you James for sharing Sarah’s Story.
I didn’t know what foot drop was until I delivered my daughter. I gave birth on Friday July 29, 2016 at 1:52 pm. I had been in labor for 26.5 hours and pushed for almost 3 hours before she was finally delivered via vacuum suction. That evening my feet were still numb, but I had had my epidural for so long everyone thought it just hadn’t worn off yet. By the next morning an MRI was ordered and by Sunday a neurologist had to become involved. I had numerous MRIs, a spinal tap, an EMG, rounds of steroids through an IV, and a few days of PT. Ultimately after one week in the hospital I was sent home with a walker, plans for in home PT, and no diagnosis.
I was not prepared to be taking care of a newborn and be paralysed from the knees down in both legs. My husband had to go back to work, so my mom moved in with us (and stayed for about a year). I was also not prepared for my injury to take such a long time to diagnose. I seemed to be a medical mystery and none of the neurologists I had seen knew what had happened to me. I was extremely depressed during this time, but had in home PT three days a week to help me to be strong enough to function in my own home and eventually I began to do outpatient PT (I was in PT for over a year total).
During this time my mom and I researched and came across an article about a new mother who had suffered foot drop after delivering her baby. We knew that had to be what my injury was and eventually it was confirmed by a neurologist that I had suffered severe bilateral peroneal and tibial nerve damage that resulted in severe bilateral drop foot. My legs had zero nerve responses. I am so blessed that my injury was peripheral (not in the central nervous system) and I had not suffered any permanent damage. It has been a long 2 year journey, but I have overcome so much!
I am happy to say that I have had many milestones along the way! I was walker free at 10 months postpartum, foot drop free at 12 months postpartum (still had a lot of ankle weakness though), driving again at 15 months postpartum, AFO free at 20 months postpartum, and 95% healed at 2 years postpartum!!
I have learned to never take anything for granted anymore. I am enjoying life again! I have been able to maintain my strength by keeping up a consistent exercise regimen which includes stationary biking, body weight exercises, and stretching.
My hope is to bring awareness to these types of maternal nerve injuries. Although rare, these injuries impacts 40,000 women annually in the U.S. alone. Doctors are not properly educated to be able to recognize these injuries when they have happened. There is a Facebook group called Moms with Femoral/Peroneal/Sciatic nerve damage from Labor/Delivery that connects women from all over the world who have suffered a maternal nerve injury and also provides resources that have been created by a few of the members of this group. I was lucky enough to find this group when I was 6 months postpartum and I have been working to bring about advocacy to these rare, but devastating injuries.
I have definitely learned how strong I can be through my journey. My hope is that anyone who has suffered or is currently suffering from foot drop to find happiness and to be able to celebrate life!!
Thanks to Jodi for her story. If you would like to share your story to help others, please get in touch via our contact page.
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