North Manchester General Hospital: An Uncompromising Position
Disclaimer: This post about The North Manchester General Hospital is not a personal attack on individuals or institutions. I am exposing a serious and systemic pattern of neglect in the public interest. I am campaigning for systemic and patient safety reform so that no one endures what I have survived.
Summary
My story at the North Manchester General Hospital was another missed opportunity to get a diagnosis and treatment for my condition. It was also the hospital that left me in an uncompromising position.
An oral maxillofacial surgeon performed a superficial parotidectomy in 2018, but he didn’t do a scan beforehand. He went in blind. He removed some of the gland, but there is still 70% remaining. The histology showed parenchymal damage and sialolithiasis. Because I came through surgery with severe facial nerve palsy, I cannot find a surgeon to remove the rest of my diseased gland. This means I am living with excruciating pain on a daily basis.
Oral and maxillofacial surgery
I saw an oral maxillofacial surgeon in 2018. The surgeon agreed to remove the superficial lobe of my parotid gland, but he did not do a scan first. He operated blind. He relied on the clinical findings from Guy’s Hospital, which had found glandular malfunction. I woke up from surgery with severe facial nerve paralysis, which recovered in four months.
The histology showed dense secretions in the ducts, calcified tissue, and reactive lymph nodes. The parenchyma was sialolithiasis.
The histology report from my parotid gland surgery at The North Manchester General Hospital in 2018.
I benefited from the section he did remove with a reduction in my pain levels. But unfortunately, I still have 70% of my damaged gland remaining. I saw a head and neck surgeon in Los Angeles one year later who confirmed via CT scanning that there is still some of the superficial lobe and the deep lobe, and there is some accessory tissue over my masseter muscle. The duct is also still connected to the gland. The surgeon did not cut the duct and tie it up.
Report from Los Angeles showing the areas of my parotid gland that still remain following surgery at the North Manchester General in 2018.
Uncompromising Position
However, I cannot find a surgeon who will remove the rest of my gland. I have seen nine different surgeons in the UK. They have all said they will not remove the rest of my gland. Their decision is because of the risk of further facial paralysis, which they say could be permanent if they perform a revision parotidectomy.
The North Manchester General Hospital has left me in an uncompromising position. If the surgeon had done a scan before performing surgery, he would have seen the pathology, and he could have referred me to a surgeon who was more confident to remove the entire gland.
No Tissue Culture
The other missed opportunity was the refusal by both the surgeon and Infectious Diseases to culture my parotid tissue. They did do a standard pathology report, but six months after my surgery the Oral Maxillofacial department at the Manchester Royal Infirmary wrote to the Infectious Diseases team at the North Manchester General. They asked them to culture my tissue and do further tests to look for rare infectious diseases like Bartonella infection. But they refused. I saw an infectious diseases consultant at the NMG once and also asked him to do these tests, but he said no.
The letter the Manchester Royal Infirmary wrote to The North Manchester General asking them to test my parotid tissue for rare infectious diseases like Bartonella.
A Missed Opportunity
This was a major missed opportunity to detect what bacteria is potentially causing this infection. The North Manchester General Hospital had my parotid tissue in one of their medical-grade freezers. They could have easily done further tests on my tissue, but they didn’t.
Their refusal to culture my tissue is particularly frustrating in light of the fact that the surgeon who performed my surgery knew that infection was the cause of my pain. He wrote in his discharge summary under diagnosis: repeated infections in the left parotid gland. Therefore, his and his colleagues’ refusal to culture my parotid gland tissue felt reckless and unyielding. Why did the surgeon decline to perform additional tissue testing to identify the bacteria causing the infection if he was aware that it was an infection?
A diagnosis from the North Manchester General Hospital stated in the discharge summary: repeated infections in the parotid gland.
Request for Reconsideration
A patient with a diseased parotid salivary gland. Vector illustration of sialolithiasis.
This post serves as an urgent call-out to the head and neck surgical world to reconsider your decision to perform a revision parotidectomy. I fully understand the risks involved in repeat surgery, but I cannot live with this pain any more. I have also explained in the footage below that if you were to perform surgery, I would sign a disclaimer to accept responsibility for any risks of either temporary or permanent facial nerve palsy.
Conclusion
Life scientist researching in a laboratory. A scientist examines biopsy samples.
When rare infections go undiagnosed for years, every missed opportunity is significant. The failure of North Manchester General to culture my parotid gland tissue represents more than mere clinical oversight. It was a denial of diagnostic clarity. In cases like mine, where symptoms persist and standard tests fall short, advanced diagnostic techniques like metagenomic sequencing can be life-altering.
The longer rare pathogens remain unidentified, the greater the risk of misdiagnosis and irreversible harm. This review on rare infectious disease diagnostics outlines why timely, precise testing is essential.
Video 4: Advocacy Video Campaign
Photo Credits: Artem Beliaikin, National Cancer Institute, Maria Kovalets and Manuel Bonadeo on Unsplash.