Rosemary Greenfield, from East Preston, says the seizures, which sometimes occur every 29 seconds, have limited her life, forcing her to leave work and unable to see friends outside her home.
The 72-year-old claimed that because of NHS failings, she had to wait months for treatment.
Ms. Greenfield took matters into her own hands, having botox injections in her back to ease the pain through a woman who described herself as an advanced botox practitioner.
She said: “I shouldn’t keep paying for botox, it’s beyond what I can afford. I’ve spent all my funeral money.”
She added that her two bank accounts are now overdrawn because of the expense.
Ms. Greenfield began experiencing severe spasms in her back in April 2024.
She contacted her doctor who prescribed diazepam and baclofen, which she took for several weeks.
However, by last May the pain had become so severe that he was taken to A&E by ambulance where he said the condition had gone from “bad to worse”.
After her visit, Ms Greenfield was referred to a neurologist and rheumatologist at Worthing Hospital.
She told The Argus how she had two neurologist appointments in 11 months and additional referrals, with little progress in resolving her convulsions.
The school worker said this has been compounded by long waiting periods between referrals and for appointments. She said the spasms, which a neurologist said are mechanical, have caused her muscles to shorten.
Ms Greenfield also added how in many cases referral letters were sent to the wrong hospital.
The trust said they wrote to the patient to apologize for the mistake, which has since been rectified and meant she did not have to wait any longer for her appointments.
Ms Greenfield contacted the Patient Advice and Liaison Service (PALS). However, he said they were “not helpful”.
In August, Ms Greenfield also made a formal complaint about her care, which the trust is currently investigating.
Desperate to find some relief, Ms Greenfield began botoxing her back through a private doctor.
She explained how this effectively stopped her spasms, but it only lasts for several weeks with the prices constantly increasing as she has more appointments.
He said: “I’ve spent over £7,000 in 18 months trying to get better because the NHS don’t want to know. I’ve lost nearly four stone in weight because of it.
“The only time they stop is at night when I lie down, otherwise they go on all day. The NHS just pushes me over the edge.”
Mrs Greenfield spent £3,100 on botox through an advanced botox practitioner.
He explained how in one case the treatment didn’t even work, believing the advanced Botox practitioner he had used wasn’t legit. He said he tried to get the money back but was unsuccessful.
Mrs Greenfield has now had two steroid injections on the NHS, which she said had been effective.
However, due to safety regulations patients are limited in how much they can have.
He said: “I’m six weeks in now from the steroid injection but it only lasts eight weeks.
“I’m in contact with a private doctor for more botox, but I don’t have the money.
“They started at £430 and now it’s £840. It’s going up every time,” Ms Greenfield explained.
He also said he has paid to see private counsellors.
At a recent appointment with a doctor in London, she said they recognized inflammation in her back and agreed to write to the NHS to encourage a further referral.
Ms Greenfield, who worked at North Lancing Primary School as a lunchtime supervisor and read to the children, described the impact the condition had on her life, both physically and mentally.
He said: “I haven’t seen any of my friends for over a year. I haven’t dated anyone, I can’t really date anymore.
“I missed all of my 71 and now I will miss all of 72. I was working part-time in the mornings at a school. I miss him so much.
“I’ve changed so much visually.”
Ms Greenfield also fears that delays in her treatment have led to further physical damage that may not be reparable.
She said: “The longer I have the spasms, it damages the muscles. My muscles are really sore now, even without the spasms. It feels like they’re pulling, it’s really painful.”
A spokesman for University Hospital Sussex NHS Foundation Trust, which is responsible for Worthing Hospital, said: “We are deeply sorry for Mrs Greenfield’s experience and remain open to meeting with her if she wishes as we continue to investigate her complaint.”
