Woman with ‘Nutcracker Syndrome’ in constant pain, ruled out by doctors

A woman who spent years “in constant agony” due to a rare condition called nutcracker syndrome is trying to raise money for life-changing surgery.

Katie Shalka, 28, has had arm pain for almost a decade, but first started seeing a doctor about it in 2018 after it went from “bad” to “terrible”.

She spent months going in and out of appointments and visiting hospitals for tests – and was repeatedly told her results were “normal” and the pain was likely “just bad periods”.

It wasn’t until her family asked for more scans – after nearly a year of uncertainty – that a specialist finally diagnosed her with nutcracker syndrome (NCS), which is when the left renal vein becomes compressed.

Compression is usually due to a blockage between the abdominal aorta and the superior mesenteric artery. The condition got its name because renal vein compression is similar to a nutcracker cracking a nut.

Katie, who lives in east London and is an actress, says she has struggled with back pain since she was a child.

Things took a turn for the worse in 2018 and she started booking doctor’s appointments – but feels she was never taken seriously.

“I was in meetings all the time and they kept telling me all the typical things. ‘It’s just menstruation. Are you sure you’re not pregnant? It’s just because you’re a woman,’” she said.

“It was very frustrating because I was in all this pain and no one knew what to do.”

One day, when Katie was working in a bar, the pain became too much and she collapsed.

“I just couldn’t take the pain,” Katie said. “They took me to [the] hospital and they did tests – but they all came back normal.”

However, the pain persisted and Katie took herself to the emergency room on several occasions. However, there were no abnormalities in the blood tests.

Eventually, Katie’s family requested that doctors do an internal scan, which Katie describes as “torturous.”

“It was indescribable. But still they said there was nothing,” she recalls.

Katie was referred to a urologist and almost sent to a psychiatrist after the doctors were convinced there were no physical problems.

However, a consultant then looked back at her initial scan – and finally spotted a problem.

“He called me back and described my left ovarian vein as ‘torturous.’ He said it could be a vascular problem,” she said.

The consultant referred Katie to a specialist who almost immediately diagnosed her with NCS.

Since her diagnosis, Katie has had numerous medical procedures, but she says none have relieved her pain and many have only made it worse.

In February 2020, Katie underwent a left renal vein transposition, becoming only the seventh person in the UK to have this procedure. But months later, she was still in agony.

“It was terrible. Five months later, I was still in pain, but the doctors said it was all normal,” she said.

“I went on holiday to Turkey to forget about it, but I was in so much pain that I couldn’t enjoy it. I was also so bloated I literally looked pregnant. It was madness.

“Then, while I was on holiday, a doctor called me and said that one of my scans was showing that my veins were blocked again. So I had to do the procedure again when I went home.”

Katie has had various other procedures since then, but says they are all focused on “managing the pain” rather than “fixing the problem”.

“I have pain every day. It’s never there. Sometimes, I have breakouts and it gets worse. But when they stop, it goes back to what it was before – a constant pain,” she said.

She had begun to lose hope of ever living a “pain-free life” until a few days ago when she visited a new specialist who she believes can help her.

“He told me about a procedure he could do that he says should have been done in the first place and could have saved me a lot of pain,” she said.

However, the operation she desperately needs costs £50,000 ($62,866) which is not covered by the UK’s NHS – so her partner Romy Ben-Hur, 32, has set up a GoFundMe to help raise the necessary money.

“The thought of having this surgery and not having any more pain? I honestly can’t imagine it,” Katie said. “I don’t remember what it’s like to not be in pain.”

Katie’s partner Romy says Katie “can’t handle this financial burden alone”.

“She never wants to be a burden and feels guilty about sharing her pain. But it is constant for him. It’s agony. I just hope we can help him get back the life he deserves,” she said.

“Her determination and strength are incredible, but she needs the support of compassionate people to make this operation a reality.”