I’ve had rare ‘nutcracker syndrome’ condition for nearly a decade – I can’t remember what it’s like to not be in pain
Read on for a full list of symptoms caused by rare nutcracker syndrome
A WOMAN has spent years “in constant agony” due to a rare condition called nutcracker syndrome – she “can’t imagine” what it would be like to not feel pain.
Katie Shalka, 28, has had flank pain for nearly a decade but first started visiting the GP about it in 2018 – when it shifted from “bad” to “horrendous”.
She spent months going in and out of appointments and visiting hospitals for tests – and was consistently told her results were “normal” and the pain on the side of her body was likely “just bad periods“.
It wasn’t until her family demanded more scans – after roughly a year of uncertainty – that a specialist finally diagnosed her with nutcracker syndrome (NCS), which is when the left renal vein becomes compressed.
This is the vein that carries blood away from the left kidney and back to the heart.
Since her diagnosis, Katie has had numerous medical procedures – but she says none have relieved her pain and many have only exacerbated it.
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 is confident he can help her.
However, the surgery she desperately needs costs an eye-watering £50,000 – so her partner Romy Ben-Hur, 32, has set up a to help raise the money needed.
Katie said: “I have pain every single day. It’s never not there.
“Sometimes, I have flare-ups, and it gets worse. But when those stop it just goes back to what it was before – a constant pain.
“The thought of having this surgery and not being in pain anymore? I genuinely can’t imagine it.
“I can’t remember what it feels like to not be in pain.”
Katie’s partner Romy added: “She never wants to be a burden and feels guilty about sharing the pain she is in.
“But it is constant for her. It is agony.
“I just hope we can help her reclaim the life she deserves.”
Katie, who lives in east London and is actor, says she has struggled with flank pain since she was a child.
I was in appointments all the time and they kept saying all the typical stuff to me. ‘It’s just your period. Are you sure you’re not pregnant? It’s just because you’re a woman.
Katie Shalka
Things deteriorated in 2018, and she started booking GP and hospital appointments – but feels she was never taken seriously.
She said: “I was in appointments all the time and they kept saying all the typical stuff to me. ‘It’s just your period. Are you sure you’re not pregnant? It’s just because you’re a woman.’
“It was so frustrating because I was in all this pain and no one knew what to do.”
One day, when Katie was working at a bar, the pain became too unbearable and she collapsed.
“I just couldn’t take the pain,” Katie said. “I was taken to hospital and they did tests – but they all came back normal.”
The pain persisted, though, and Katie took herself to A&E on several occasions. But still, no abnormalities appeared in blood tests.
Eventually, Katie’s family demanded doctors conduct an internal scan – which Katie describes as “excruciating”.
She said: “The pain during the scan was excruciating. It was indescribable. But still they said there was nothing.”
Katie was referred on to a urologist – and was nearly passed on to a psychiatrist as doctors were convinced there were no physical issues.
However, a consultant then looked back over her initial scan – and finally noticed an issue.
What is nutcracker syndrome?
Nutcracker syndrome affects your left renal vein, which carries blood away from your left kidney and back to your heart.
If you have nutcracker syndrome, two arteries in your belly compress part of your left renal vein.
This compression raises the blood pressure in your renal vein and forces some blood to flow in the wrong direction.
As a result, nearby veins swell, causing symptoms and potentially leading to complications.
The condition is thought to be rare and tends to affect children and adults up through their 60s.
Symptoms of nutcracker syndrome that you may notice include:
- Blood in your pee
- Feeling dizzy when you stand up
- Flank pain on your left side
- Pain during sex
- Pain when you pee
- Pelvic pain
- Swollen veins in the scrotum
Source:
Katie said: “He called me back in and described my left ovarian vein as ‘torturous’. He said this could be a vascular problem.”
The consultant referred Katie to a specialist – who almost immediately diagnosed her with NCS.
NCS is a condition where the left renal vein becomes compressed – usually due to becoming trapped between the abdominal aorta and superior mesenteric artery.
The condition got its name because the compression of the renal vein is similar to a nutcracker cracking a nut.
No respite
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.
She said: “It was horrific. Five months later, I was still in pain – but doctors said it was all normal.
“I went on holiday to Turkey to try and forget about it but I was in so much pain I couldn’t enjoy it.
“I was also so swollen I literally looked pregnant. It was crazy.
“Then, while I was on holiday, a doctor called me and said one of my scans was showing my vein was blocked again.
“So I had to have a 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”.
‘One step closer’
She began to believe she would never get better until very recently when her partner Romy, a musician, actor and singer, set up a meeting with a specialist.
Katie said: “He told me about a procedure he could do – which he says should have been done in the first place and could have saved me a lot of pain.”
Unfortunately though, the surgery would be done privately and costs £50,000.
Katie does not have private health insurance, and, even if she was to get it now, the surgery would not be covered because of the number of procedures she has had done.
Romy has therefore set up a fundraiser on GoFundMe in the hopes of helping Katie raise a goal of £22,000.
She said: “Katie cannot face this financial burden alone.
“Her determination and strength are incredible, but she needs the support of compassionate people to make this surgery a reality.
“Every single donation – no matter how small – brings Katie one step closer to living without pain.
“Even if you’re unable to donate, sharing her story could make all the difference, not just for Katie, but also for raising awareness of Nutcracker Syndrome.”
You can donate to Katie’s GoFundMe .