Second surgery goes well for Samantha Smith

Date published: 21 August 2017

Samantha Smith’s family have been told that her second lifesaving surgery on Friday (18 August) went well, and although Sam was ‘in a lot of pain, she was quite responsive’.

On Friday, the mother of two from Smithy Bridge underwent a riskier and unexpected second lifesaving operation to stabilise the vertebrae closest to her head, similar to her first operation in July.

The three-and-a-half hour procedure also saw the surgeon remove Sam’s occipital nerve, which had been crushed – potentially a source of the agonising pain she had been experiencing following her first surgery in July.

Speaking before the surgery in Washington, Samantha told Rochdale Online she hoped it will further restrict her range of motion, as following the initial procedure, she was currently experiencing too much movement - despite titanium and bone grafts. Following recent scans prior to surgery, Sam also discovered her spinal cord had thickened after her July operation, a condition unfamiliar to her surgeon, who is seeking advice.

However, just two days after the operation, Samantha’s dad posted an online update on Sunday (20 August) stating his daughter had managed to walk for the first time and sit in a chair for over an hour without her neck brace.

He commented: “Although in a lot of pain, Samantha was able to summon up the strength to take her first steps. She was then able to sit up in a chair for over an hour without her neck brace. Her appetite has gone into overdrive: in the last day, she has eaten more than she ate in the last week. I think they call it the ‘munchies’; it must be from the current medication.

“I can't stress enough the immense difference between the care in this hospital and the last, which is having a positive effect on Sam.”

Sam, whose brain and spinal cord were being crushed under the weight of her own skull, was diagnosed with Ehlers Danlos Syndrome (EDS) in December 2016, a genetic condition where connective tissue holding the body together is faulty and too weak. Affecting around one in 5,000 people worldwide, it causes extreme widespread pain, daily dislocations, cardiac abnormalities and multiple other illnesses.

Because of EDS, the brave mother of two’s body processes medication too fast to have an effect, resulting in immense pain and a struggle to find effective pain relief methods.

Since December, Samantha 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).
In July, she underwent a gruelling five-and-a-half hour procedure to stabilise her neck and back using bone marrow from Sam’s hip mixed with crushed bone 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. At the same time, Sam also underwent surgery for tethered cord syndrome, releasing her spinal cord from where it had attached to her vertebrae.

Sam was also 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.

Having gone through so much after a lifetime of pain, Sam is now fighting to accept a new normality, and may also be required to undergo a third operation as she also requires testing for thrombosis of the blood vessels in her brain.

Sam already has to raise a further £50,000 to cover the costs of the most recent operation, as unlike the UK, the costs of surgery stateside means a bill of tens of thousands of dollars is racked up.

Each time Samantha books an operation, she has to book and pay for all related appointments herself, including, but not limited to, anaesthetists, blood tests, blood screenings, scans, her medical history and physicals, and all medication, effective or otherwise.

As a result, the fundraising deadline has been extended to November.

To donate, visit:


Or transfer donations to:
Name: Save Samantha
Acc no: 90266248
Sort code: 20-45-45

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