Samantha Smith suffers setback after slipping just days after life-saving neurosurgery

Samantha Smith with her children

Samantha Smith has suffered a setback in her recovery after she slipped and fell just days after her life-saving neurosurgery.

The single mother-of-two underwent a five-and-a-half-hour procedure 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.

Sam, who worked as a psychotherapist, was originally told she'd be walking by 15 July, but had already taken her first post-operative steps two days earlier. She then uploaded a video of herself walking with the aid of a nurse, which has since been viewed over 31,000 times.

https://www.rochdaleonline.co.uk/news-features/2/news-headlines/111316/samantha-smith-undergoes-lifesaving-surgery

However, later that day, Sam banged both the site of her tethered cord and the back of her neck after she fell, resulting in extreme pain which is now proving difficult to treat. Due to a very high metabolic rate as a result of her Ehlers-Danlos Syndrome, her body is processing the pain relief drugs too fast for them to have an effect.

She explained: "We're having awful difficulty finding ways to manage the pain with medication. It seems I'm resistant to oral medication and after so many days in hospital, my veins have started to collapse and reject my IVs. In one day alone, I had 11. The final point of that was when I was injected with something simple, I think Benadryl, but it burned through my veins and my skin. My whole arm swelled up and everything was a mess.

“It was damn painful and it was at that point that Doctor Henderson said I needed a PICC line or to start oral medications, to find something, anything, that would work for me. I was getting half an hour relief from some of the medications, which was keeping me going."

Sam said: "I did have a CT scan after the fall and nothing showed up, but it may be too small to show without surgery to check. I’m not strong enough for that. There’s the possibility of potential damage from things settling in the wrong place.”

She admitted: "I am struggling. I've never, ever felt pain like it. To have such a large fusion and have my lower spine fused and my tethered cord reduced too at the same time. I’m not well enough for further surgery yet and I’ve been referred to around eight specialists for pain, issues with my breathing and vision therapy and other problems."

A PICC Line is a peripherally inserted central catheter, inserted through the arm and threaded through the veins to the chest as a means of delivering medication.

She continued: "The drugs that I was then discharged with were three times the dosage I should have been on, so I was pretty much comatose for a good few days. I was scared to take the medication until I saw Doctor Henderson again. I've had to take it because the pain I'm in is beyond words. Night after night, I've cried myself to sleep. If it wasn't for my mum and dad, I don't know how I'd get through.

"There's been nights where I've been too scared to sleep because I thought I wouldn't wake up because the pain has just been unbearable, and other nights I haven't wanted to wake up because the pain has been unbearable. I do expect a lot of myself."

Fighting back tears, she added: "I'm so ashamed to say that because I've got two beautiful children and I am one lucky, one blessed lady, I know I am, but sometimes the constant pain, and the side effects and the neurological issues, and feeling the lack of medical care and support are too much.”

The mother from Smithy Bridge said: "I'm struggling to swallow and I'm struggling to dig deep and find a fight. I just want to come home but I know my physio doesn't start for a month after surgery. I'm not the kind of person who can just lie here and wish the days away. I need to feel like I'm progressing, doing something every day, not sat on my backside wishing the month away."

She smiled: "I saw at the Rushbearing Festival you cheered for me and I cried again, but it was happy tears. I knew I wasn't forgotten.”

Samantha will require further surgeries and treatments when she is stronger, including surgery for a dislocated jaw and potential surgery at the very top of her spine. She still needs to hit her £150,000 goal to pay for the surgery costs and further treatments.

Whilst Sam is struggling with the pain and various negative side effects from surgery, she has seen some benefits already and isn’t due to meet with her neurosurgeon until October, although she can arrange an appointment as necessary.

She added: “Before the surgery, I couldn’t stay upright and my legs feel stronger now. Before the room would move like I was experiencing vertigo but now it’s a different kind of pain. The paralysis was stronger before and a lot more frequent, and I’ve not had the pain and pressure in my head once. The tremors stopped too, but might be coming back.”

Her neck brace no longer fits as Sam also grew an inch-and-a-half following the surgery. She is now required to wear the ‘uncomfortable’ brace night and day to keep her head in the correct position as she recovers.

She concluded: "Things will be different; I have my life back. I'm not giving up and I'm thankful for every one of you. Please keep sharing, keep caring and please be there to help me celebrate when I'm back. We've got some big celebrations to do."

Samantha was diagnosed with Ehlers Danlos Syndrome (EDS) in December 2016, after ‘a lifetime of pain and eight years of tests, misdiagnoses and ill health’.

Sam is now planning on writing a book about her experiences and has been verbally recording her story as she is currently too weak to write.

EDS is a genetic condition that means connective tissue holding the body together is faulty and too weak, causing extreme widespread pain, daily dislocations, cardiac abnormalities and multiple other illnesses. It affects around one in 5,000 people worldwide.

She had 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).

To donate, visit:

https://www.youcaring.com/samanthasmith-788861