Clival chordoma research
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Recovery after surgery

For her partner. 8 September 2026. Written for a large clival chordoma removed through the nose (endoscopic endonasal surgery), with radiotherapy afterwards. Every number has a source in research thread 18 (47 papers, PubMed IDs checked). Where a figure is my judgement from the papers rather than a quoted result, it says so. Nothing here is about survival; it is about getting through the treatment and back to life.

The short version

Hospital is days. Wounds are weeks. Energy is months. Nerves are months to a year, and some do not come back. The whole treatment, from the first operation to the end of proton therapy, takes about 5 to 8 months. Plan for a year of reduced capacity, with the first 2 to 3 months the hardest and the proton course the second dip.

Stage by stage

The operation. Six to eight hours or more. For a tumour this size, growing into the cavernous sinus, surgeons often plan two operations some weeks apart, or take what is safe and leave the rest to radiotherapy. Ask the unit which they intend. The hole in the skull base is closed with fat from the belly or thigh and a flap of nasal lining (the nasoseptal flap), which cuts the leak rate by more than half (Harvey 2012). Often a drain in the lower back for two to three days, which halves the leak rate again in a randomised trial (Zwagerman 2019) but means lying flat.

Hospital. Four to seven days if it goes cleanly (judgement; brain tumour surgery in general has a median of 4 days, Dasenbrock 2015, and the endoscopic route is about two days shorter than open surgery, Soffer 2024). A spinal fluid leak or meningitis makes it ten to fourteen days or more, and a leak usually means a second small operation to patch it.

The complications that set the timeline back. In modern endoscopic series: spinal fluid leak 2.5 to 20 percent depending on the unit (Zoli 2018; Koutourousiou 2012); meningitis about 1 in 8 if it leaks, almost never if it does not (Lai 2014); injury to the carotid artery about 2 percent in chordoma surgery, higher than for other skull base tumours, usually controlled without lasting harm (Gardner 2013); a new nerve palsy in 3 to 7 percent, permanent in 2 to 4 percent; death well under 1 percent (Borg 2016). The open approaches through the side of the head carry more nerve damage and infection (Komotar 2011), which is one reason to want an endoscopic unit.

The first six weeks at home. Nasal crusting in nearly everyone, taking about three months to clear fully (de Almeida 2011). No nose blowing for about six weeks, no heavy lifting for about eight, no washing hair head-down for about nine (Lee 2023). Looking after herself within one to two weeks, out of the house at three to four. Pain after nasal surgery is usually moderate and short (Wu 2022). Anti-inflammatories such as diclofenac are usually stopped about a week before an endonasal operation and held for one to two weeks after it because of bleeding from the nose and the flap (unit practice, not trial evidence); paracetamol and short-term opioids cover the gap. Tiredness is the main complaint and lasts 6 to 12 weeks. The pituitary is checked with bloods at six weeks and three months.

The nerves. Surgery takes the pressure off. After endonasal chordoma removal, about 80 percent of nerve problems improved or resolved, including three quarters of sixth nerve palsies (Fatemi 2008, a small series); in cavernous sinus surgery more broadly, about half of pre-existing palsies improved (Koutourousiou 2017). Recovery runs over 3 to 12 months. Palsies that have been present for months, as the patient's right third nerve has, recover less often and less completely: across all causes, about two thirds of these palsies recover fully and one in six not at all (Park 2008). Double vision is managed with prisms or a patch meanwhile; any squint operation waits for a year of stability, after radiotherapy.

Radiotherapy. Standard after surgery, with protons the NHS route. Typically starts 6 to 12 weeks after the last operation, once the reconstruction has healed and the planning MRI is done. About 37 to 41 sessions over 7 to 8 weeks (Ares 2009; Mattke 2023), daily on weekdays, at the Christie in Manchester or UCLH in London, with accommodation provided. During it: sore mouth and throat, skin reaction, tiredness; serious acute effects in about 8 percent (Chhabra 2023). After it: one to two months of fatigue, then a slow climb. Quality of life measured across a chordoma cohort dipped after treatment and took years to recover fully; people whose tumour was fully removed before protons did better throughout (Bryjova 2025).

Work and normal life. After nasal pituitary surgery, which is smaller, 70 percent are back at work by three months and sick leave is still raised a year on (Suzuki 2025; Krabbe 2026). For chordoma surgery followed by protons, non-physical work at 3 to 4 months if all goes well, otherwise after the protons. In the Chordoma Foundation survey a third of patients reported lasting fatigue, and a third changed or reduced their work (Song 2017).

What the patient can do now that shortens it

  1. Eat. Low albumin (a protein marker) nearly doubles the odds of a serious complication after brain tumour surgery (Dasenbrock 2017). At 51 kg on about 45 g of protein a day, this is the one modifiable factor. Target 70 to 80 g protein and 1,800 to 2,000 kcal; ask for the dietitian and supplement drinks now, not after surgery.
  2. Get the vitamin D level measured and corrected to normal. That is what bone and wound healing need; more than that does not help.
  3. Keep the pain plan simple before surgery. Anaesthetists plan around her current opioid dose; the more that is regular and written down, the better the post-operative plan.
  4. Ask the unit four questions: one operation or two; nasoseptal flap and lumbar drain as routine; their leak and carotid injury rates; the expected gap to proton therapy and who makes that referral.

Honest limits

No paper gives hospital days specifically for chordoma. No series gives the injury rate for the basilar artery, which in the patient's case is partly wrapped. The return-to-work figures come from smaller pituitary operations and will run late for her. Nerve recovery figures are from series where many palsies were recent; hers is not. The timeline above is the median course; roughly one patient in five has a complication that adds weeks.

Brief for the family · source file em-docs/em-recovery-timeline.md · last edited 10 September 2026