Samantha Smith in ‘excruciating pain’ following successful second operation

Date published: 25 August 2017

Following a successful second operation on Friday 18 August, Samantha Smith has been suffering from ‘excruciating pain’ since the procedure.

Requiring similar to surgery to that carried out in July, the mother of two from Smithy Bridge underwent a riskier three-and-a-half hour procedure to stabilise the vertebrae closest to her head, and removal of a crushed occipital nerve. The nerve was potentially a source of the agonising pain she had been experiencing following her first surgery.

However, since the successful operation, Samantha has been suffering excruciating pain. Her dad has said the days since surgery have been ‘the most harrowing’.

He wrote: “I don't enjoy writing these updates, especially the ones which are not upbeat and full of promise, but in order to continually raise awareness of this cruel disease and maintain the fantastic support of you all, then I have to do it.

“As most of you are aware Samantha had to undergo further surgery last Friday, and if you read my last update, you will know that surgery went well. For the first two days, Samantha responded brilliantly, unfortunately this positive response was not to continue, and the last few days have been the most harrowing.

“Emotionally as a family and carers, we are both mentally and physically drained. To watch my daughter going through this torture, where every second of suffering seems like an hour and every hour seems like a day, is very hard to endure. Samantha has been and is still going through an immense amount of pain. She has begged us to get her some form of pain relief and all we can do is to try and comfort her until it is time for the next medication.

“I have mentioned the word torture on a few occasions, but there is no other way to describe it both for Samantha and her family. There has to be a better way than this. The nursing staff, although caring, have no understanding of EDS and the continual strain it puts upon the body.

“They can't comprehend that oral medication, which would knock out each and every one of us, has no effect on Samantha; she may as well have taken Smarties.

“For the sake of Samantha and everyone else who suffers from EDS, we need to keep this story going we need to reach a wider audience and push for changes. Although we the carers do not suffer the actual pain, we feel torn apart by our helplessness.

“I only wish I could see an end to this and I keep telling Samantha everything will soon be okay, but I now wonder, who I am trying to kid?”

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.
As with the previous surgery, Sam’s body is absorbing pain relief medication too quickly to have an effect. Due to the risk of overdose, Sam cannot be given any additional drugs.

She said: “I wish I could share news of learned lessons and successful analgesics, but I can't.

“Dominic, myself and my family worked hard to put a list together for care after this op, recognising what would and wouldn't work from last month. Unfortunately, the hospital had other plans.

“On Wednesday, I had an experience I'm not proud of and I'm not emotionally strong enough to share: I was frantic with fear.

“Yesterday, I spent the day in excruciating pain from 4am through to 6pm when Dr H finally managed to organise IV medications - more trial and error pain management.

“I can not - and will not - ever try to fathom the pain I was under. I still am only now slightly relieved as the edge is taken off a little. I'm not scared; I'm petrified. And I'm internally beating myself up for this yet again. I wish I could share positivity.

“I am just so, so thankful for my family, Dom and friends for keeping me going, one small millisecond at a time.”

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.

The community are still fighting to help remove the financial pressure the surgeries have placed on Samantha.

On Sunday 27 August, Sam’s partner, Dominic Apenteng will be throwing himself out of a plane to raise funds towards the new target.

On 2 September, Save Samantha will be holding a charity stall at the Wardle village fete, and are also looking for people to raise funds at the Littleborough 10k on October 1.

An online auction night will take place on 6 September, featuring beautiful artwork donated from Belgium.

Parents Against Grooming UK will be hosting a family fun day on 24 September at Wellfield Working Men’s Club and will be donating half of all proceeds to the Save Samantha fund.

Later this year, Paul Mears and Dan Hirst will be swimming 10 miles across the Atlantic Ocean from Lanzarote to Fuerteventura to raise money for Sam.

Find an event to help Samantha:

To donate, visit:

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

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