Samantha Smith needs to raise another £150,000 for third surgery

Samantha, pictured after her second surgery

1 More Image(s) In Gallery

Following two operations in Washington with a leading surgeon over the summer, Samantha Smith has now revealed devastating news: the surgeries have failed to stop her neck from dislocating, and she now requires a third operation which will further restrict her movement.

This is estimated to cost in the region of £100,000.

Sam already needs 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.

In April, Rochdale Online broke the news of Samantha’s race to raise £150,000 for lifesaving neurosurgery after her brain and spinal cord were being crushed under the weight of her own skull:

https://www.rochdaleonline.co.uk/news-features/138/community-news/109403/samantha-smith-in-desperate-rush-to-raise-%C2%A3150000-for-life-saving-surgery

Over the past six months, Samantha hit national press, television and radio: with the help of the public, she managed to raise enough for the surgery to go ahead. However, she still needs your help to pay off the outstanding amount from the second surgery and raise enough for a third operation on her neck.

Now back at home in Smithy Bridge, Rochdale Online caught up with mother-of-two Sam, who 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.

Samantha was also diagnosed with further complications 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).

During our interview, Sam gestured to a huge black-and-white carrier bag to her left.

She explained: “I don’t know if you can see that big bag down there, but that is full of my medical bills from America that I have not opened yet.

“I have only opened two and I can already see that we are at least £30,000 short. We need to cover the costs of the last surgery before I can consider and think about booking my next one. I am estimating we are around £50,000 short from my last operation and I can’t book the next until that is covered.”

Speaking about her most recent operation to stabilise the vertebrae closest to her head, Sam described how she knew ‘straight away’ that the surgery had not gone quite as she had intended.

“I knew straight away it had not worked and that I was dislocating in areas of my neck. My surgeon ‘soft-fused’ my neck with taping in a couple of segments. As I looked through my notes after surgery, he’s noticed they are very unstable so he has gone back through with extra taping three times, which he does not usually do, just to really hold it in place.”

“There is no metal in two areas so I could have a little bit of movement, but obviously it helps.”

Sam then demonstrated the extremely limited range of movement she has from left to right. The dislocation in the soft-fused areas means there is still the risk of damage to the hard-fused areas.

The psychotherapist continued: “Then there is the bone grafting in that area which should help stiffen things up, so it is really unusual for that method not to work.

“A few days before I came home, I had a final meeting with my surgeon, which I insisted on. I was not leaving until I got some answers. That is when I found out a couple of areas had been soft-fused and I was told it was not possible to be dislocating.

“He said it would be the metal grinding inside my head, which I do feel. I can hear it, and there is a big difference in how it feels. One hurts, one is metal grinding, and because I dislocate in other places, I know what it is.”

Sam was told the metal might be clashing if she moved the wrong way or held her posture incorrectly.

“I sat there whilst he told me things had fused well on the areas he had worked on, which is good, and then I asked what he thought of my posture whilst we had been there and whether or not I had moved wrong.

“He said no, so I took my neck brace off and my whole neck clunked out of place. I’d been dislocated for the last hour. My surgeon was baffled and couldn’t deny I was dislocating because he felt and heard it.”

“My spine and my hips also constantly drop and clunk out of place” – here Sam sat forward and moved slightly, resulting in repeated audible cracks –

“My surgeon was completely shocked and has only ever seen one case similar in his 20-30 years of working with EDS sufferers. In that case, it was a rapid deterioration: he ended up wheelchair bound very fast.

“After a lot of research, they found he was missing a muscle-building hormone. With EDS, your ligaments and tendons are already stretched and damaged, they aren’t doing their job. Your muscles almost have to step in and do that job to hold things in place. So if you’re lacking the hormone that can do that, it’s going to be hard for your muscles to do that.

“When I was told about this, it made complete sense. My EDS only started becoming obvious when I was pregnant, and it fluctuates throughout the month. Sometimes when I’m walking, I can feel my lower spine completely shifting. I’ve also had other hormone issues, which no-one has been able to explain.

“But because we were both out of money and coming home a week later, we couldn’t do anything to address it.”

Sam is now determined to explore the likelihood of missing the same hormone, but confesses it is ‘a very long process’ as she would need to be referred to a London-based specialist after seeing someone closer to home. Some of her internal organs have been damaged through her illnesses, and her symptoms she experienced for a tethered spinal cord have also since returned: this was originally released from her vertebrae during the first operation in July.

She went on: “If I did need further surgery on my spine, there are options in England and in Europe that I’d like to consider, which would dramatically reduce cost. It’s literally a case of getting my neck finished in the US, then hopefully continue with other surgeries within Europe. It would be a massive help, as it’s easier and cheaper for friends or the children to come and visit in Europe opposed to America.

“I could potentially see the specialist in London through the NHS, but I’d have to go through this funding panel, and I don’t really have the time for that, so that looks like it would have to be done privately, with potentially another operation on my stomach.

“It’s almost a case at the moment of having to prioritise which needs come first. I’d say it’s my neck, but if I can get things done in the meantime on the NHS, I’ll get them done. I also need to find an endocrinologist, a hormone specialist who understands Ehlers-Danlos Syndrome, which is very rare.

“There is a man at Christie’s who has some understanding of parts of it, who I am trying to meet. But I don’t know whether or not he has enough knowledge. And it’s almost experimental, so they’d need to check my bloods every day to see how the hormones are fluctuating.

“It is also finding someone with this knowledge who is willing to do this, which is going to costly. The hope is then, when I see the specialist, they can pinpoint this hormone, and if it is the case, they can supplement intra-venously. Again, that’s private and it would be a lifetime thing. That would have to be considered in the funding but I have no idea how much it would cost, so right now, that’s not in the equation.

“If they can supplement the hormone and I can really work at physio and strengthening my muscles in my lower spine and hips, then I can put off or avoid a lot of surgery in those areas and hopefully improve things. That’s my long-term goal.”

She smiled: “I have a plan and there’s hope.”

She has now started physiotherapy, designed to strengthen her muscles through resistance without movement.

She added: “Some of the physio will be done as family because I really want to educate the children on protecting the body and strengthening their muscles. Although one has been diagnosed with EDS, it won’t harm them to learn to really look after themselves.

“I worry they look at me and see their future, which is scary. So we try to stay as positive as we can for each other.”

The next step of surgery on Samantha’s neck would involve hard fusing the parts that were previously soft fused, further restricting her movement. She would then have to learn a new way of moving to view left or right, turning her entire upper body.

“Because they have fused my lower spine, I will be moving from my hips. There is the risk of the unspoken, my surgeon says, which is eventual full fusion from skull through to my hips. I would have hardly any movement. That would be massively life-changing, whereas right now there would still be the potential that I could drive with adaptions to a car, and regain my independence.”

Despite the dislocations, Sam has seen some positives from surgery, such as a reduction in some of her neurological symptoms. Prior to surgery, she was experiencing paralysis and collapsing on a regular basis.

She said: “After the first surgery, I had vertigo – if it was vertigo – when I would be outside in my wheelchair and the buildings would seem like they were closing in on me. I did not know the right way up. Sat at a table or a chair, I was having to hold on to it because it was almost like everything was upside down, which is really scary.

“My hearing would go, I was losing consciousness and I had to lie down immediately, no matter where I was. That happened a few times. Once or twice I tried to go, where they had a bit of a buffet on and I felt like I made a scene because the lift was triggering things. By the time I got to the table, I was clinging onto it crying because I did not know which way up was. I knew I was either going to have a seizure in front of everybody or…”, she trailed off.

“I could not hear or see properly and there were a lot of neurological things happening. Since my second surgery, that is massively stabilised. I still collapse but that is a big relief because it is so scary. Last night I had my first experience of the paralysis again, but that was like sleep paralysis when you’re half awake and half asleep, and that was not as bad as what I have had.

“The risk of decapitation when I look left or right is a lot better. My head was holding on by just 10% and now it is stabilised, that is a lot better. What we are looking at now is trying to avoid damaging that.”

The 30-year-old will be back in Washington for a follow up at the end of this year, and ideally would like to be able to book her third surgery for around January or February 2018.

“That gives enough time to see how this fusion has taken and see if the bone is solidified and whether or not the dislocations and manipulation of them have damaged them. It gives them time to settle and build myself back up because it would be too dangerous for any more surgery in that area just yet. It gives a couple of months for the money, and I would not want to be in over Christmas or anything like that.”

Sam is currently taking around 40 tablets a day, plus other oral medicines and topical creams. Whilst some of the treatments are helping, some of them are not available in the UK.

She said: “Unfortunately, none of them are taking away the pain for the dislocation in my neck. I think they are reducing some of the other types of pain though. One is a rare type that they do not really use, a type of opiate. That seems to do a little bit of something, which is a bonus as they generally do not work on me. I find that the cream works somewhat.

“Mostly it is about allowing myself to relax. I am used to dealing with pain but this is another level. Before I could whack a dislocation straight in but now they get stuck, so it’s not quite as easy.

“Before I could pop it back in, but now I’ve got a bone graft trying to solidify and it is all moving each time I do it. I’m risking damaging the bits which have been successful as well, which would mean really starting from scratch.

“Not only do I not want to be doing that, I do not know if it is possible. It would be a mess, which I guess puts time pressure on us being able to hard-fuse.”

Samantha continued: “When I got back from America, some absolutely fantastic friends had been looking after my house and have converted my garage to a rehab room for me. They had top-to-bottomed my house and cleared everything out.

“They had a massive ‘welcome home’ banner and had done my gardening. They had presents for the children and balloons everywhere. They had really gone to town and that was just fantastic. I have not had chance to thank them properly yet, so thank you. They have been great.

“After three days’ travelling, lots of pain, jetlag, and messing up my meds because of the time difference, we pulled up and I was crying because I was so overwhelmed. It was lovely and that’s the kind of support I have. It’s amazing and I did not know that type of support existed.”

“Virgin were great too. They were aware of me and I did not even know. An air hostess I met on the way out there told them about my story, and on the way back the pilot came out. He took the children into the cockpit and had cake and cookies for them, and came out a few times to check on them, see if they were alright and make a fuss of them.

“They made a fuss of me too, which was nice. They got me a hamper, which I never got to keep because of security at Heathrow Airport.

“The support has been amazing but I am overwhelmed at having to raise that amount all over again. It was so incredible the first-time round; we did it so fast. I do not think it will be as easy this time around.

“There are a lot of events planned as well, which Gwen has been taking care of [Gwen helps manage the Save Samantha appeal page]. She has been brilliant, I do not know how she does it all. We will get some more in over Christmas, but Gwen has shone through.”

Find an event to help Samantha:

http://www.rochdaleonline.co.uk/events/search?searchtype=text&searchvalue=samantha

To donate, visit:

www.youcaring.com/samanthasmith-788861

PayPal: https://www.paypal.me/savesamantha

Or transfer donations to:

Name: Save Samantha
Account No: 90266248
Sort Code: 20-45-45