Samantha Smith requires urgent scans on brain stem and cranial cervical junction
Date published: 05 August 2017
Samantha with her partner, Dominic Apenteng
Samantha Smith needs need scans as soon as possible on her brain stem and cranial cervical junction. She is due to meet with her life-saving neurosurgeon, Doctor Henderson, next week for results, and also to see if she is allowed home before her follow-ups.
After spending all of Thursday (3 August) morning in an appointment with Doctor Henderson, Sam confirmed: “I'm working out the plan for future surgeries and treatments and looking into fixing health issues that are an unfortunate result of stage one surgeries: something I hadn't considered.
“I need scans as soon as possible on my brain stem and cranial cervical junction. I’ll be seeing him again next week for results and to see whether I can go home and come back in a few months for follow ups.”
Samantha, whose brain and spinal cord were being crushed under the weight of her own skull, underwent a five-and-a-half-hour lifesaving procedure in Washington DC on 11 July to stabilise her neck and back and release her tethered spinal cord from her vertebrae.
Crushed bone was mixed with bone marrow from Sam’s hip and used to fill in the space in her neck and cervical spine; over the course of six months, new bone will form and build over the sites.
The psychotherapist from Smithy Bridge suffered a setback in her recovery after she slipped and fell just days after the surgery, with the possibility of potential damage a risk, as Sam banged both the site of her tethered cord and the back of her neck.
Sam, 30, is currently trying to manage her symptoms and control her pain, but is struggling due to her Ehlers Danlos Syndrome (EDS) which was diagnosed in December 2016 - a genetic condition that means connective tissue holding the body together is faulty and too weak, one symptom that can arise is the body processing pain relief medication too fast to have an effect.
Affecting around one in 5,000 people worldwide, it causes extreme widespread pain, daily dislocations, cardiac abnormalities and multiple other illnesses.
Since then, Sam also received diagnoses including Craniocervical Instability (CCI), which can arise in EDS sufferers due to a lack of connective tissue support at the craniocervical junction (between the skull and first two vertebrae of the spine), tethered cord syndrome, Atlanto Axial Instability (unstable vertebrae which are easily dislocated).
On Wednesday (2 August), Samantha received four injections of nerve blocks and anaesthetics in her occipital nerves which only lasted 90 minutes.
She said: “Physically, I'm still in an immense amount of pain. The new pain relief worked for a few days and then stopped. A cruel part of EDS and its influence on medication. I’m a bit gutted about that as they’ve been known to last a lifetime for some and it’s a big source of my pain there.”
The mum of two also needs blood tests to check her liver and adrenal glands are functioning correctly, plus sleep studies and further scans to rule out other issues.
Sam was due to have surgery for a dislocated jaw, however she says the specialist wants to treat her with a splint method instead. Her jaw, which she describes as ‘bone on bone’, has deteriorated so much, it’s causing both pain when eating, talking and sleeping and damaging her hearing.
Sam explained: “My jaw specialist doesn’t believe in surgery and wants to treat me with a conservative jaw splint method which means lots of visits over the next year. It would take a year with visits in between and will always need adjusting and splinting each time I have neurosurgery.
“It was a bit of a shock, but anatomically, it makes sense. If they realign my neck, they need my jaw to be in line or it pushes it out. It’s possibly a large source of the pain I’ve had since surgery.”
She commented: “I’m emotionally tired but thankful all have continued with fundraising plans for me. It's been a challenging journey so far.
"In addition to these uncertainties, I'm slowly trying to get used to my new body, new restrictions, abilities, disabilities, the things I'll never do again and the things I'll have to learn to do differently.
"Emotionally, it's harder than I could have planned for. It's going to take time, mourning my old self and adapting to my new normal, but it's a life that I fought hard to have, and thanks to everyone’s support, it's mine.”
Whilst Sam is struggling with the pain and various negative side effects from surgery, she has seen some benefits already, and was even feeling strong enough to watch her children play in the swimming pool for an hour on Wednesday.
She added: “It was my first chance to feel the grass between my toes and lie in the sunshine watching my babies splash and swim for an hour, which is a blessing in itself.”
Samantha will require further surgeries and treatments, and needs to raise as much as possible to help pay for the costs.
The community still continues to support Sam through fundraiser events, including a family fun day taking place at Littleborough Cricket Club on Saturday (5 August).
However, some members of the community are taking extreme measures in order to raise funds for Sam. Her partner, Dominic Apenteng is set to skydive later this month, and Danny Hirst and Paul Mears are swimming from Lanzarote to Fuerteventura in October
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