Lynne's story

Hi, my name is Lynne, and this is my story…

I am a very positive, bubbly person who always tries to make the best of any situation.

Ten and a half years ago, at the age of 52, I began experiencing pains in my spine and down my legs.

Whilst visiting the doctor, I also mentioned my issues with incontinence. They attributed the incontinence to the total hysterectomy I underwent at the age of 27, as well as the two bladder TVTs performed afterward.

I was sent to the physio but after two sessions I was worse. The physio said I needed an MRI which I had a couple of weeks later. Four weeks after the MRI I called the GP as I hadn’t heard anything, and I was getting worse. I was still going to work as a bank manager. The surgery said they hadn’t got the results back and they’d chase it, this was at 16:30. At 8:00 the next morning my GP told me to go straight to the surgery but not to drive. She said when I got there that the MRI showed a problem, and I was to go straight to the hospital (Lincoln County) where they were waiting for me on Orthopaedic. My husband drove me 4 miles there.

After I got there, I was directed to a bed and asked about my recent food intake, after which a cannula was inserted. The surgeon informed me that there was an urgent need for a surgical procedure due to an issue with my back, although the specifics were not disclosed. Shortly thereafter, another doctor arrived and closed the curtains around the bed for a ‘private’ conversation with the original doctor, perhaps assuming that their conversation wouldn’t be overheard.

He expressed doubts about proceeding with the operation, stating, “You can’t do this operation; Lincoln doesn’t do this,” while the other doctor argued that it was necessary due to the emergency nature of the situation. As a result, the operation did not proceed, and I was transferred to another ward for complete bed rest while alternative arrangements were made. However, the staff in the new ward disagreed with the necessity for bed rest and allowed me to move around as needed, including using the toilet. I remained in that ward for a period of 10 days.

Later, when the original doctor returned from leave, he asked why I was still at the hospital. The nurse explained that Nottingham had indicated I did not require their assessment. Approximately an hour later, he returned and informed me that I would be transferred to Sheffield for “urgent” surgery, wishing me luck. At 2:00 PM, I was transported from Lincoln to Sheffield Northern General Hospital via taxi instead of the ambulance, which should have been used in that instance.

Upon arrival at 3:30 PM, I was informed that I would undergo surgery involving the placement of rods and screws in my spine due to Spondylolisthesis and Cauda Equina Syndrome. By 5:00 PM, I was undergoing a spinal fusion procedure with the insertion of two rods and four screws, along with additional work on my facet joints and the removal of a tumour.

Three days later, I was informed that I would be discharged and would receive an appointment for a follow-up. I later learned that if I had lived in Sheffield, I would have been referred to the spinal rehabilitation center for assistance with walking, bladder and bowel issues, and sexual function concerns. Unfortunately, I did not receive any similar support from Lincoln.

Four months later, one of the rods snapped, requiring a revision procedure. However, the surgery couldn’t be performed until seven months later. This involved another fusion, removing the metalwork, replacing it, along with the insertion of an iliac cage and a bone graft from my hip. Each individual error was distressing on its own, but when combined, the experience was truly horrendous.

I now use a wheelchair because I experience pain and weakness that limit my ability to walk, even for short periods.  I suffer also from bladder and bowel incontinence, as well as a loss of sensation in the saddle area, which has affected my sexual function. Following the fusions, I’ve undergone several laminectomies and discectomies, along with three coccyx manipulations under anesthesia. In December 2022, I underwent a procedure to have a sacral nerve stimulator fitted to alleviate fecal incontinence.

Beyond the physical effects, there’s been a profound impact on my emotional and mental well-being. Having to give up my career and sell our home due to accessibility issues, particularly the inability to access upstairs areas, has been especially challenging. My relationship with my husband, whom I’ve been with since I was 17, has undergone significant changes. Over the past decade, we’ve been deprived of numerous experiences, prompting me to take any measures possible to prevent others from enduring similar difficulties.

I had to leave my job, and while many assume it’s due to mobility issues, the side effects of medication also played a significant role. The challenges of incontinence and the associated odors have also contributed to this decision. Losing my ability to drive has stripped away my independence and hindered my ability to support others. I also find myself seeing my friends less as they are still actively employed.

The two activities I miss most are dancing the night away and storming off after an argument, dramatically slamming the door behind me!

Throughout my life, I’ve been the caregiver. Surprisingly, my mother underwent two spinal fusions, one at 24 and another at 42, during a time when treatments involved traction and plaster jackets. Witnessing her experiences from a young age, I was determined to live a more fulfilling life than she was able to.

I rely on a powerchair for mobility, and recently, we completed the adaptation of a bungalow to ensure access to every room, both indoors and outdoors, through ramps. Managing my medication regimen can be challenging, so my husband assists me to prevent any confusion.

Toileting remains the most challenging and hard aspect. I must maintain a regular schedule and hope for timely access. Wearing pads and manually evacuating are necessary but deeply embarrassing and kept hidden. Despite these difficulties, I still make efforts to spend time with friends, although our meetings now occur in different locations.

I often struggle to admit when I need to rest, even though it’s essential for my well-being.

For the past few years, I’ve been participating in the Brain and Spine Foundation Thursday Neuro socials and recently joined the new monthly Midlands calls. These gatherings provide a safe space where we can openly discuss anything, and it’s reassuring to connect with others who understand what we’re going through.

Having guest speakers join us has been incredibly beneficial, both practically and personally. Despite our diverse conditions, we often share similar symptoms, allowing us to support each other in various ways.

Just because I’m smiling doesn’t always mean I’m okay or feeling better. I like it when people continue to ask me to do things, even if I decline most of the time. It means a lot to me to be included and thought of. Also, I wish people understood how challenging it is for my husband, not only to handle the practical aspects but also to witness my pain and struggles.

Make the most of your good days. A positive mind really does make things easier. Make sure that your doctors listen to your concerns, and don’t hesitate to seek a second opinion if you feel it’s necessary. Remember, politeness is important, but there are times when you must assert yourself and make your perspective heard clearly.

My daughter is my source of inspiration. She consistently strives to empathise with others’ perspectives. Whenever I find myself venting about someone, she gently reminds me to consider their struggles, saying, “Yes, Mum, but can you see how she isn’t as positive as you? It must be really difficult for her.”

She’s a strong advocate for women’s rights, and human rights in general. Her activism extends beyond her words; she actively participates in marches and demonstrations. Her fashion sense reflects her individuality – sequins aren’t reserved just for nights out.

Kind, honest, sometimes brutally so, she remains unwaveringly authentic. I aspire to embody her integrity and strength as I continue to grow.

I have this invisible companion, whom I call my “Ninja,” a term originating from Japanese culture meaning ‘one who is invisible’. I see my chronic pain as embodying this concept. It’s constantly present, though sometimes quieter. Then, suddenly, it strikes me sharply and painfully. I may experience brief relief when medication kicks in, but soon enough, the pain resurfaces. If there were a way to rid myself of this relentless Ninja, I would be immensely grateful.

It is important to share some insights on recognising the Red Flags of Cauda Equina. Had I received treatment within the first 24 to 48 hours, it’s likely I wouldn’t be experiencing the symptoms I do today. I encourage you to take a moment to explore the following documents to gain a better understanding of how to identify these signs.

Thank you for reading my story.

Warm regards, Lynne