I thought I just had whiplash after car crash – now I could be internally decapitated at any moment
A MUM who thought her symptoms after a car crash were due to whiplash has since found out she could be "internally decapitated" at any moment.
Louise Turner, 36, says she fears for her life every day and her normal life has crumbled around her since the accident.
The mum-of-four, of Ashford, Kent, has suffered everything from slurred speech to agonising headaches and a suspected stroke.
And she has become wheelchair bound and unable to leave her house without a neck brace, meaning her wedding has been put off for almost two years.
Louise was told she had a combination of conditions that have made her neck muscles too weak to support her head.
One of those is craniocervical instability, meaning the joints in the area where her skull and spine are lax and move around too much.
The condition can be set off by physical trauma, such as a car accident, and slowly leads to compression of the brainstem and spinal cord.
Louise, who is mum to Luis, 18, Sidney, 14, Travis, 10, and Astraea, nine, said: "I try not to think about what could happen because it's terrifying.
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"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.
"I want to be a good mum 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."
The bride-to-be, who is engaged to science teacher Robin McNicoll, 33, says her problems began after a minor car accident in December 2019.
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.
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, and had dozens of scans.
In the meantime, Louise said her symptoms ran riot and she spent months in and out of A&E with a host of related problems.
In January 2021, she joined a Facebook group for people with similar symptoms and members told her about a leading expert at the Neuroinstitut in Barcelona, Spain.
After examining her scans, in April 2021, the expert diagnosed Louise with craniocervical instability, which makes it hard for her to hold her own head up.
We just want to go back to a normal life. It would be priceless.
Louise
The condition causes Louise to have intense and painful headaches, nerve pain in the face, random twitching, difficulty swallowing, slowed thinking and difficulty walking.
But the instability in the neck, and the nerves that control bodily functions, can also lead to digestive problems, excessive sweating and a fast heart rate among other symptoms.
Louise also had a private consultation in this country, where she was diagnosed with Ehlers-Danlos Syndrome (EDS), a genetic form of hypermobility that can lead to craniocervical instability.
Louise said she had always dislocated her knees easily and suffered from random aches and pains, but had not thought much of it.
She said: "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."
Louise is now facing three conditions, as before the crash, she had been diagnosed with fibromyalgia.
The long-term condition causes pain all over the body, the NHS says, as well as extreme fatigue and headaches.
Louise’s consultant in Spain recommended two surgeries to strengthen her spine with bone, partially from donor bone.
'LIFE ON HOLD'
Her obstacle now is raising money on to go to Spain, so she can be treated by the surgeon she has so much faith in.
She needs £35k for two operations and another £15k for the additional costs such as accommodation while in recovery.
Louise, a former carer who is unable to work, said: "Having the surgery would mean we’d get our lives back, so I can be there for my children and my fiancé.
"It would give us a second chance at life. We could have our dream wedding, which has been put on hold.
"When we first got engaged in April 2019, it was the happiest day of my life.
“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.
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"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."
