Conor hails ‘incredible’ results of first surgery

Incredible” is the word Conor Burke uses again and again as he reflects on the results of his first spinal surgery in Barcelona just two months ago.

“It's really the small things that make the biggest difference,” the Bealnamulla man muses with wiseness beyond his 23 years as he explains that he has gone from being bent over in a wheelchair to walking with the aid of a crutch. He has also regained control of his bladder and needs much less pain medication following the surgery to de-tether the spinal cord which was stuck to the vertebrae in his back.

The 23-year old has Ehlers-Danlos syndromes or EDS, a group of rare inherited conditions that affect connective tissue and cause joint hypermobility, problems with bladder control, digestive problems, extreme fatigue, joint pain and heart issues.

A GoFundMe page, Conor’s Journey, was set up on Conor’s behalf by his family last year in a bid to collect the over €160,000 cost of a specialised spinal fusion operation in Barcelona. It was boosted hugely by two anonymous donations of €120,000 back in June meaning the family could proceed with the surgery.

Unfortunately, following tests earlier this year with the world's leading specialist on the condition, it was discovered that he would need another operation before the spinal fusion because his spinal cord was tethered meaning the base of the cord was stuck to the vertebrae.

It was this nine-hour operation that took place in June, and his mother Lisa says while it turned out to be a bit more complex that they first thought, Dr Gilete and his team were “absolutely fantastic” and the results are there now for everyone to see.

“His operation was a bit more complicated Dr Gilete had to individually detangle the fibres of his cord where all of his nerves were stuck to his vertaebrae,” she details, adding that his spinal cord was so twisted doctors told her it was “within weeks of snapping”.

Yet here in Ireland, Lisa claims all he was offered was pain management for his condition. While he still has EDS, and ongoing challenges, the results for Conor have been very positive and helped him regain a quality of life.

“He's flying, he's regained control of his bladder and to see him smile is a big thing. I'd forgotten how tall he was, he's 6 foot 2 and I forgot because he was so bent over,” says Lisa.

“He's walking now with the aid of one crutch, he needs that until he gets his knee brace because his left knee keeps dislocating and I'd be afraid of a fall. When he gets his knee brace he'll have support and that will keep the patella in place,” adds Lisa.

“You can see the spark back in his eyes. He's a lot happier in himself because he was alive but he wasn't living. Now he starting to live again,” and he can walk, shower himself, and get out and about.

“We were home a few days and we were driving through the town and he kept going 'look at that Mam'. I said we were only away for a month not ten years. But he said to me 'I could only see the floor of the car up to now' because he was so bent over. He couldn't see things around him..”

For Conor, and those with EDS coming behind him, Lisa is vowing to fight for proper treatment for those with the condition in Ireland.

“We do not have an EDS specialist in this country and I intend to fight the Minister for Health full force on that. He (the Minister) said to me through Denis Naughten in writing that EDS comes under rheumatology, yet when I said that to Conor's rheumatologist, he said the HSE are not equipped to deal with Ehler's Danlos Syndrome (EDS),” she complains. Lisa Malone is also critical of the situation where EDS patients cannot avail of the EU Cross Border Directive to avail of treatments in Spain and across Europe unlike someone, for example, who needs a hip replacement because they cannot get a consultant to sign it off.

Asked why she believes that is the case, Lisa says, in her view, it comes down to funding and a lack of knowledge or expertise about EDS. She claims many simply blame joint hyper mobility for the symptoms.

A healthy teenager up to 17, Conor went from that to needing an ileostomy surgery on his colon, suffering chronic pain and needing self-catheterisation as his bladder stopped working. He was also diagnosed with Postural orthostatic tachycardia syndrome or POTS, a condition that affects blood flow and can result in a rapid increase in heartbeat.

It was also discovered that Conor, who hopes to return to his Business and Languages degree course at TU Dublin, September twelve months has Craniocervical instability or CCI, along with AAI Atlanto-axial instability and then later again, EDS.

In October, Conor and Lisa travel again to Barcelona to meet with Dr Gilete, an EDS specialist, to have tests and learn more about the spinal fusion operation which could happen later this year.

“At the minute because of the CCI and the AAI, the vertaebrae at the base of the neck are unstable and they are moving where they shouldn't be,” explains Conor, and this is why he has to continue wearing the neck collar. While it is a massive surgery with risks, Conor says ultimately he hopes it will “settle down the symptoms” and increase his quality of life further.

It involves the complete fusion of the spine from the base of the skull to the top of the thoracic spine.

In the meantime, they will shortly attend a cardiologist in The Hermitage for tests because his heart rate has become erratic.

“That's the problem with EDS, you fix one problem and another one pops up,” the mum of four adds, but she, and Conor are determined to fight each issue as they arise.

“Dr Gilete was very clear to Conor that this first surgery isn't a cure because there is no cure but it is to give you a quality of life and by God it has improved his quality of life hugely,” underlines Lisa.

Conor, who will speak about his experience at the Rare Ireland Conference in Athlone on September 30, echoes that sentiment, thanking everyone who has supported his so far, and in particular, his medical team in Barcelona.

“In some ways it's been such a long space of the time and in others it has been so short, but the improvement in that space of time has been incredible.

Asked what what he's enjoying since the first operation: “Just getting out and about, it's the simple things more than anything.”