A mum who spent months trying to treat pain she described as ‘worse than labour’ was actually suffering from a 5cm tumor pressing on her spine.
Karen Windsor went to great lengths to relieve the severe back and hip pain she was experiencing, with countless visits to physiotherapists, chiropractors, massage therapists and acupuncturists.
But no one could tell her what was wrong or ease her agony.
The 36-year-old, from Perth, told FEMAIL her pain was so extreme she was unable to lie down or sit, so she kept on her feet juggling work and being a mum.
“I was feeling the pain shooting down the back of my leg that would basically make me stand still, taking deep breaths, unable to think or move until it passed. It would take anywhere from one to ten minutes at a time,” she said.
Karen Windsor (pictured) spent months in agony with pain in her gluteal muscle and groin, which she described as ‘worse than childbirth’. It was so bad that I couldn’t sit or lie down
Eventually, scans showed that Karen had a large benign lesion in her spinal canal that was pressing on her nerves, and she was rushed into surgery to have it removed before it got any bigger.
After waking up from the operation, she immediately felt ‘relief’ from her months of agony and is now leading a normal, active life after spending weeks rebuilding her strength.
In June 2022, Karen began experiencing a ‘throbbing pain’ in her ‘abdominal ball’ and left thigh, which quickly progressed to the point where she could not sit down.
“The pain was so bad that the only way to sleep at night was to use over-the-counter sleeping pills,” she said.
“Thankfully I had a sit-down desk at work, so I would be standing all day. Even at home in the evening, I didn’t sit down until I put my daughter to bed. It was all day.’
As her condition worsened, Karen was in and out of physiotherapist appointments and the doctor’s office looking for answers, but medical staff were left ‘stunned’ as ‘nothing was working’.
The 36-year-old mum spent weeks with doctors trying to find the cause of her pain before they found a 5cm lesion in her spinal canal which was putting a lot of pressure on her nerves.
She was put on heavy painkillers and anti-inflammatory drugs and tried sports massages, going to a chiropractor and even acupuncture, but nothing made a difference.
Karen’s mysterious pain would be tolerable or ‘dull’ when she woke up in the morning, but would increase throughout the day.
The worst times of her daily routine were when she had to drive home because sitting in the car was so uncomfortable, as well as bathing her five-year-old daughter.
“That was probably the hardest part, reaching over the bathroom to turn on the faucet and get it in and out,” Karen recalled.
“There were some evenings where I sat next to her because I couldn’t do anything else. I just had to sit there and let the pain pass.’
Karen said she would be ‘lost’ around the house trying to pack her daughter’s nursery bag for the next morning, cook dinner and feed the pets while her husband Mark was away at work.
“I couldn’t stop, I couldn’t sit down because my glutes hurt. When I would lie on the couch in the evening, I would want to pack all these heat packs around me,” she said.
“But I knew the second I had to get up I was hit by this intense wave of pain that I couldn’t even breathe, it was worse than giving birth.”
Karen juggled her job and being a stay-at-home mom while her husband was away for work all the time with excruciating pain (pictured at her wedding four months before the pain started)
Karen felt like she couldn’t take time to rest because not only was it too uncomfortable to sit or lie down, but she was afraid of what would happen to her family if she wasn’t able to run the house.
“Because I didn’t have an answer, I was like, ‘What if I stop and never start again?'” she said.
“I have a child and my partner works FIFO, he’s away for a week at a time; Who’s going to run our lives if I’m not here and I can’t? I was really scared to stop and I think a lot of women would be also this fear.’
As doctors tried to find the cause of Karen’s extreme pain, she was referred for an MRI which disappointingly showed nothing. So she was put through more testing.
“It was not an alarm bell. I said, ‘Okay, they just need more information and anything I can do to give them more information, I’ll be there,’ but it’s amazing how the weeks and months go by,” she said. .
It wasn’t until the results of Karen’s second MRI, three months after her pain began, that the doctor told her she had a 5cm tumor in her back.
The type of tumor attached to her spine was known as a myxopapillary ependymoma, which has a 98 percent survival rate and is most often benign.
‘She was very straight to the point. She said, “That shows you have a lesion in the spinal canal and it’s putting a lot of pressure on your nerves, which explains all the nerve pain you’ve been having,” the mother recalled.
“It was such a relief to finally know what it was and have a plan.”
Karen had no choice but to have the mass removed not only because of the pain it was causing, but because doctors feared it would continue to grow and cause irreversible and life-changing damage to her bowel and bladder.
Almost four weeks after her diagnosis, Karen underwent surgery to remove the lesion which she said went ‘surprisingly’ well.
“Once they drilled through the spine and opened up the spinal cord, he was kind of sitting there like a little worm,” she laughed.
“He had a small blood supply and as soon as they clamped down and cut him, he was ripped right off – my little alien invader.”
While coming out of surgery was a challenge, Karen said she felt immediate relief from the excruciating pain she had been experiencing for the past few months.
After the doctors found the benign tumor they performed an operation to remove it. Karen said she felt immediate relief when she woke up
“From the moment I came out of surgery, the nerve pain was non-existent, I was just going through the ‘I just had surgery’ phase,” she said.
Karen was eager to get out of bed and start her recovery to a pain-free life, but she would be passed out for the first 36 hours after surgery.
“It was really frustrating because I just wanted to get up and start moving,” she said.
“There was tightness in the back from where they operated, but the nerve pain is gone. I felt like a new woman within days, different from where I had been those months before.’
After four days in the hospital, Karen was released and ordered to rest for three weeks, which was a tough ask for someone so eager to get back on her feet.
“It felt so weird because after the surgery I felt so much better than before, but I was on doctor-imposed home rest,” she said.
After five days of home rest, Karen was no longer taking the pain medication she had been taking for the previous months. She began to enjoy her time off as she relaxed and recuperated
“I couldn’t lift things, I couldn’t push a shopping cart, I couldn’t pick up my daughter, so there were definitely things I had to be very careful about and follow doctors’ orders.”
After five days of home rest, Karen was no longer taking the pain medication she had been taking for the previous months.
She began to enjoy her vacations, especially since Mark was able to take time off work and support her.
“I went from being a busy mom working five days a week, doing it all and then not being able to do much,” Karen said.
“But I took it as my time to stop and reflect and heal after months of not being able to sit, lie down, relax, even laugh and have fun and sit with my daughter and feel like I could engage with my family. ‘
During her recovery, Karen gradually returned to an active lifestyle.
Being ‘back to normal’, Karen considers herself one of the lucky ones and her ordeal has given her a new lease on life.
“It was almost six months, it was a long time for my body to be under that kind of stress, so (my approach) was about being gentle, but getting out and moving,” she said.
“I had felt so, so weak in my body for so long, that feeling strong again was my biggest priority.
The only after-effect from the operation, a year on, is a numbness in her muscles and strangely her big toe, which could take another six months to resolve – but Karen said she’s glad to be alive with such minor side effects.
Being ‘back to normal’, Karen considers herself one of the lucky ones and her ordeal has given her a new lease of life.
“It might sound bad, but there’s that appreciation for life and I’m appreciating my body for what it does for me,” she said.
“You only get one life and to have it affect me for six months in such a chronic way and then potentially have it be something more serious, I feel like I’m so lucky to have this second chance.”
(tagsTranslate)daily mail(s)femail(s)women’s health(s)Perth