‘I could be internally decapitated at any time due to a terrifying condition’



A mum has told how she could be internally decapitated at any moment as a result of her terrifying medical condition.

Louise Turner, 36, says she misses dancing with her children as she desperately fights to get brain surgery that could transform her life.

The former carer found out last year that her neck muscles were too weak to support her head, due to a number of conditions, leaving her wheelchair-bound and unable to leave her house without a neck brace.

The mum longs to walk down the aisle at her wedding but was forced to put plans for her big day on hold.

Now she is seeking to raise £50k for brain surgery so she can be given back her life, after a horrifying few years.

Louise has to wear a neck brace
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Her neck muscles are too weak to support her head
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The mum lives in Ashford, Kent with her science teacher fiancé Robin McNicoll, 33, and her four children Luis, 18, Sidney, 14, Travis, 10, and Astraea, nine,

Fearing she could die at any minute, Louise feels her only hope is surgery available in Spain and is now desperately trying to fund it, saying: “I try not to think about what could happen because it’s terrifying.

“When we first got engaged in April 2019, it was the happiest day of my life.

“We were at an oak tree with a swing, Robin asked to take a photo of me and he asked me how much I loved him. I didn’t know how to respond and he asked if it was enough to marry him. I was euphoric.It was the best feeling.

The mum was in and out of hospital
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Her MRI scans showed something was wrong
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“It was so romantic. Back then we could have never imagined anything like this happening.

“I want to be able to enjoy my wedding. I don’t want to be screaming and shouting in pain on what should be the best day of my life.

“I used to always dance with my children, but I haven’t been able to in two years and I desperately want to dance with them again on my wedding day, too.

“But we are having to come to terms with the fact we might not have that special day for a very long time, as all our money is going towards surgery.”

Louise’s problems started after a minor car accident in December 2019 triggered more than two years of constant and agonizing headaches and relentless pain all over her body.

The mum with her sons, Luis and Sydney
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She said: “Over the next few weeks, I started to have headaches and neck pains, but I assumed it was whiplash.”

Sadly, that was the start of a living nightmare for Louise, who had been diagnosed with fibromyalgia, a long-term condition causing pain all over the body, in February 2019, after struggling to cope with stiffness and pain.

Before that growing up, she had always dislocated knees easily and suffered from random aches and pains, but had not thought much of it.

She added: “I dislocated my knee a few times, but I just assumed that it was normal. I was told I was double-jointed.

“I had random pains that were unexplained when I was younger and I’ve always had migraines, but I didn’t worry about them.”

Despite sometimes feeling like she was “walking through cement” because of muscle stiffness, she put a brave face on things and even enjoyed a trip to Paris later that summer.

But the car crash changed everything for Louise.

And, in January 2020, she started to experience tremors and what she describes as “stroke-like symptoms,” such as slurred speech.

Since then, she has seen numerous specialists, who have given her a variety of different diagnoses.

She hopes she’ll be able to walk down the aisle
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She was forced to buy a £1.6K powered wheelchair
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At one point, it was suspected that she had multiple sclerosis (MS) – a condition that can affect the brain and spinal cord.

At others, medics have thought she had everything from severe headaches and migraines to possible Chiari malformation, where the lower part of the brain pushes down into the spinal canal.

In the meantime, Louise says her symptoms have run riot, as she has experienced everything from slurred speech to agonizing headaches and a suspected stroke, which led to numerous investigations, including MRI scans.

Louise with her sons Luis, Sydney and Travis
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Feeling increasingly isolated and depressed, for months she was in and out of A&E with a host of related problems until desperate for help, in January 2021 she saw an otologist – a specialist in ear diseases – who suggested she joined Facebook groups for people with similar symptoms for support.

This was her eureka moment as, through members of a Facebook support group, she was told about a leading expert in her type of symptoms, at the Neuroinstitut in Barcelona, ​​Spain.

After examining her MRI and other scans and speaking to her, in April 2021 he diagnosed craniocervical instability – meaning there is excessive movement between her skull and across most of the cervical vertebrae.

The mum is now desperate to raise the funds
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Robin and Lousie have been together for four years
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He recommended spinal fusion surgery, which uses donor bone to strengthen the spine, and skull base decompression surgery – an operation that involves removing a small section of bone from the base of the skull.

She also had a private consultation in this country, where she was diagnosed with Ehlers-Danlos Syndrome (EDS) – a genetic form of hypermobility.

Deciding to stick with these diagnoses, Louise’s obstacle now is finding the funding to go to Spain, so she can be treated by the surgeon she has so much faith in.

Sadly, with two private operations, airfares and accommodation to pay for while she recovers, she needs £35k for surgery and another £15k for the additional costs.

So, she has launched a GoFundMe page, appealing to kind strangers to help her fund the medical care that she is positive will save her life and eventually see her enjoying the first dance at her wedding.

She said: “Having the surgery would mean we’d get our lives back, so I can be there for my children and my fiancé.

“With everything we’ve gone through, it’s taken a massive toll on me, but also on my family, who have become my carers.

“We just want to go back to a normal life. It would be priceless.

“It would give us a second chance at life. We could have our dream wedding, which has been put on hold.

“I want to be a good mom again. I want to be there for my children.

“I used to dance with my kids every single day and I miss those precious moments so much.”

You can donate to Louise’s fundraiser here.

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George Holan

George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.

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