Patient Stories · Real Journeys · Real Outcomes
Stories from patients who found their way here.
These are real patient journeys — told honestly, with the beginning, middle, and end included. Every story is different. Some found us after years of being undiagnosed. Some came for a second opinion that changed everything. Some arrived with an urgent diagnosis that needed answering immediately.
All stories are shared with patient permission. Names and identifying details have been changed or omitted to protect privacy.
These accounts reflect individual patient experiences. Outcomes vary between patients and are influenced by many factors. These stories are not presented as typical results, but as honest accounts of real journeys through the practice.
Robert had been an active man his entire life. In early 2024, persistent breathlessness on the golf course prompted his GP to arrange a chest X-ray. The result was a 4.2 cm mass in the right upper lobe. CT and PET confirmed adenocarcinoma. The histology came back with EGFR mutation testing pending.
At the NHS MDT, the conclusion was that surgery was not appropriate — the mass was felt to be too close to the mediastinal structures and the lymph node involvement made it a borderline Stage IIIA. The recommendation was chemoradiotherapy. Robert was 61 years old with good lung function and no cardiac history. His daughter, a nurse, felt something wasn’t right.
“The MDT letter just said ‘not suitable for surgical resection.’ There was no explanation of why. No one called us. We got a letter.”
Robert’s daughter emailed the practice with all existing imaging. Mr Scarci reviewed the CT and PET-CT before the video consultation. He identified that the mediastinal lymph node involvement was limited to a single station and that the tumour, while close to the mediastinal pleura, did not invade it.
His view: the tumour was resectable with a right upper lobectomy and systematic lymph node dissection, and potentially curative. He requested EBUS to confirm the N2 nodal status before committing to surgery. The EGFR mutation was also now confirmed — positive — changing the adjuvant treatment picture significantly.
“He had read everything before we even said hello. He’d already looked at the scan. He told us clearly — he thought it was operable.”
EBUS confirmed N2 involvement was limited. After neoadjuvant targeted therapy (osimertinib), Robert underwent VATS right upper lobectomy. Histology confirmed R0 resection — clear margins. He completed adjuvant targeted therapy and is currently disease-free at 18 months post-surgery.
He returned to golf at 14 weeks post-operatively.
What this story illustrates: An MDT “inoperable” conclusion from one centre is not the final word. Operability assessments depend on surgical experience and available technique. A second specialist opinion took 10 days from first email to surgical plan.
The pain began in 2016 after James lifted a heavy box — a sharp catching sensation at the right lower rib margin. It was dismissed as a muscle strain. Over the following years it became chronic. It was worse when he reached across a desk, turned in the car, or took a deep breath after exertion. Occasionally, if he moved a certain way, there was a pronounced clicking sensation.
Over seven years: three GP practices, two physiotherapy courses, one rheumatology referral (seronegative, normal CRP), and one pain management clinic. The pain management clinic prescribed neuropathic pain medication and suggested psychological support for pain acceptance. Nobody ever pressed on his lower rib margin.
“I started to wonder if it was in my head. You get told enough times it’s musculoskeletal, you start to believe them.”
James read about slipping rib syndrome online at 2am after seven years. He recognised every symptom. He booked a private consultation. Before he finished describing his symptoms, Mr Scarci performed the Hooking Maneuver — hooking his fingers under the lower costal margin and pulling gently anteriorly. The exact pain reproduced immediately.
Diagnosis: slipping rib syndrome, right 9th rib. An ultrasound the following week confirmed the hypermobility. Surgery was offered the following week.
Costal cartilage resection of the right 9th rib was performed under general anaesthetic. James was home the same evening. The catching pain he had experienced for seven years was gone the next morning. At six weeks, he was teaching full-time and had started playing football again for the first time in years.
What this story illustrates: Slipping rib syndrome is the most consistently underdiagnosed condition in the practice. The diagnostic test takes 30 seconds. Many patients have spent years and thousands of NHS appointments before receiving a correct diagnosis.
Sophie’s pectus excavatum was noticed at her 12-year-old health check. She was referred to paediatric surgery. The indentation was moderate — not the most severe case — and she was told it was “mainly cosmetic” and that surgery “wasn’t indicated.” She was told to come back if she had cardiac symptoms.
She had no cardiac symptoms. But she did have significant breathlessness on exertion that her peers didn’t have. She stopped swimming at 14. She wore specific clothing for 15 years. She asked her GP about the Nuss procedure at 25 and was told the procedure “can’t be done in adults.”
“I genuinely thought I just had to live with it. I didn’t know the surgery was possible at my age. No one ever told me.”
Sophie’s CT scan showed a Haller index of 3.6 — moderate to severe. Cardiac MRI confirmed mild right ventricular compression. The Nuss procedure is not age-limited in the way it had been explained to her. Recovery from the procedure is more painful in adults than teenagers because the chest wall cartilage is less flexible, but the operation and the result are entirely achievable.
Mr Scarci operated six weeks after the initial consultation.
The post-operative period was painful — as warned, more so than in teenagers. Pain well managed with a combination of paravertebral analgesia and oral medications. Sophie returned to work at four weeks. At six months, the chest contour was significantly improved. At eighteen months, she went swimming for the first time since she was fourteen.
What this story illustrates: Adults are not “too old” for pectus excavatum correction. The Nuss procedure is performed in adults across a wide age range. Many patients have been incorrectly advised that surgery is not possible in adulthood.
Amelia’s first pneumothorax was an emergency admission. The second, eight months later, was treated with a chest drain and attributed to a small apical bleb. She was told this was “bad luck” and offered VATS bullectomy. She had the surgery. Six months later, the third pneumothorax occurred — despite the pleurodesis. She noticed that it had happened again within two days of her period. She mentioned this to the registrar who documented it but did not act on it.
“I kept saying — it happens when I have my period. I kept being told that was a coincidence.”
At consultation, Amelia mentioned the timing for the third time. Mr Scarci immediately recognised catamenial pneumothorax — a condition caused by thoracic endometriosis, where endometrial tissue on the diaphragm or pleura sheds and bleeds cyclically, creating air and fluid that triggers pneumothorax.
A gynaecological referral was arranged alongside the thoracic planning. Laparoscopy confirmed pelvic endometriosis with diaphragmatic involvement. The surgical plan combined VATS diaphragmatic fenestration repair and repeat pleurodesis with concurrent gynaecological management and post-operative hormonal suppression.
Amelia has not had a pneumothorax in 24 months since the combined surgical and hormonal approach. She continues on a GnRH analogue and is planning fertility treatment with close monitoring.
What this story illustrates: Catamenial pneumothorax is consistently under-recognised. The diagnosis requires someone to join the dots between menstrual cycle and pneumothorax timing. Addressing it surgically without also addressing the hormonal component produces recurrence.
Michael’s bypass was uncomplicated. But four months later, he was unable to climb stairs without stopping and sleeping was difficult lying flat. His cardiologist confirmed the bypass was patent and his cardiac function had improved significantly. His respiratory physician reviewed him and found reduced breath sounds at the left base. A chest X-ray showed an elevated left hemidiaphragm.
This was attributed to “post-operative changes” and he was reassured. Over the following six months, his breathlessness did not improve. He was referred to pulmonary rehabilitation. His quality of life was poor.
A sniff test (fluoroscopic assessment of diaphragm movement) showed complete paradoxical movement of the left hemidiaphragm — rising on inspiration and falling on expiration, the opposite of normal. This is classic phrenic nerve palsy — a recognised complication of cardiac surgery, caused by cold cardioplegia or retraction of the phrenic nerve during bypass.
The diagnosis: left phrenic nerve palsy with a paralysed left hemidiaphragm. VATS diaphragmatic plication was recommended to tighten and fix the diaphragm in a lower position, preventing it from moving paradoxically.
Michael underwent VATS diaphragmatic plication under general anaesthetic with a 3-day hospital stay. Spirometry at 3 months showed a 22% improvement in FVC. He was able to sleep flat again within 6 weeks and returned to walking 5 miles without stopping at 4 months.
What this story illustrates: Post-cardiac surgery breathlessness is not always cardiac. Phrenic nerve palsy is a recognised complication of cardiac surgery that is frequently under-diagnosed. A simple sniff test makes the diagnosis. VATS plication is an effective, well-tolerated procedure with significant functional benefit.
Do you recognise your story here?
If any of these journeys resonate with your situation — a missed diagnosis, an “inoperable” verdict, a condition that’s never been properly explained — a consultation is the next step.