Clival chordoma research
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Skull base map

Written 8 September 2026, updated twice on 16 September 2026: first for the Southampton appointment, then again the same morning after her partner set out the full eighteen month history, which corrected one entry and added another. Both corrections are marked below rather than folded in silently. From the imaging report as relayed (the written report has still not been seen) and standard anatomy. Sources by PubMed ID (PMID) and NCBI Bookshelf chapter number (NBK); the full thread is em-research/17.

Read this before the rest of the update

Nothing here measures the tumour. The last scan is the MRI of 2 September. Every change in this update comes from symptoms reported since 8 September, not from an image. The pattern of those symptoms is what forward growth into the sinus and nasopharynx, and rising pressure inside the head, would look like. That is an argument for a repeat scan, not a substitute for one. Anywhere below that says a structure is now involved, read it as "the signs point here, and here is the test that would settle it".

Two other things that keep the map honest. Several of the new symptoms are almost certainly not the tumour at all, and they are listed as such rather than quietly left out. And one of the most important new items is not new at all: the pressure-on-straining sign turns out to have been present since about mid August, which changes the timeline rather than adding to it.

The one thing to hold onto

A chordoma grows in bone and presses on the brain and nerves from outside. It does not grow into brain tissue the way a glioma does. So the question "which parts of the brain are affected" means "what is it pressing on", and the answer can be read off the anatomy.

What has changed since 8 September

1. The forward direction now has the most new evidence. On 8 September the blocked right nostril was a single "possible". Since then there have been five more local signs, all pointing the same way: pain behind the nose (10 September), a right ear hum on waking (10 September), nose pressure worse lying down (11 September), a metallic blood taste lasting five minutes with nasal pressure alongside it (11 September), and a recalled sensation of fluid in the nose (11 September). One of those is a shrug. Five in five days, all on the same axis, is a direction of travel. The sphenoid sinus and the back of the nose move from "possible" to the best-supported new extension, and the right ear hum adds a structure that was not on the map before: the eustachian tube, whose opening sits in the side wall of the nasopharynx, immediately below and in front of the clivus.

The five-minute blood taste is the one to say out loud. Seconds-long metallic tastes are a drug and nerve phenomenon; five minutes with nasal pressure fits material actually present and draining back where she can taste it.

2. The raised-pressure explanation for the left sixth nerve palsy got stronger, and older. On 15 September she reported that straining brings on head pressure and dizziness, and that this has been happening for over a month, so from about mid August, around when the double vision began. Head pain and dizziness on straining is a recognised sign that pressure or fluid flow at the back of the skull is affected. On 8 September the left sixth nerve palsy had two candidate causes with nothing to separate them. It still has two, but the pressure branch now has independent support from a symptom that predates the palsy. This raises the priority of looking at the back of her eyes. It does not lower the priority of the scan: both causes remain live and they are not mutually exclusive.

3. CORRECTED. The jaw is not a new territory. Earlier on 16 September this section read that increased right jaw sensitivity on 12 September might mean the tumour reaching below the cavernous sinus. Her partner's account of the history, given the same morning, records jaw pain alongside the headaches by late 2025. So the jaw has been symptomatic for about a year, and 12 September was worsening rather than onset. That reads in the opposite direction from a recent spread.

What it does say is worth more than what it took away. The jaw is the third division of the trigeminal nerve, and it is the one division that does not run through the cavernous sinus: it leaves the skull through its own hole lower down (NBK482283, NBK532976). Sparing of that division is what localises a trigeminal problem to the sinus. Two divisions symptomatic in 2025, the eye and the jaw, therefore point back at the ganglion in Meckel's cave, which sits against the clivus, rather than at the cavernous sinus alone (PMID 8786827). That is a localisation to the tumour's own site from an early date. The open question for the examiner is which parts of her face are numb, as opposed to painful.

3b. ADDED. The lower cranial nerves move from green to amber, on history rather than a new symptom. A private osteopath in May 2026 noticed that her voice sounded unusual and referred her back to the doctor for a thyroid check. Until 16 September this map recorded the lower cranial nerves as not involved on the grounds that no voice change had been reported. One had been, four months before diagnosis, and it came from a stranger with no reason to imagine it. The nerves to the voice box and palate leave the skull immediately below the clivus. The character of the voice decides what it means, and it points three ways: hoarse or breathy is the nerve to the voice box; nasal, as if speaking through a cold, is the palate and would fit the nasopharyngeal extension above; quiet or effortful but otherwise unchanged is pain, morphine and exhaustion, which is the likeliest single answer. Swallowing is normal and the tongue does not deviate, which is why this is amber and not red.

4. Three things that look alarming and are not the tumour. The rectal bleeding on 12 September is drug induced proctitis from the diclofenac suppositories, which have been stopped. The ten seconds of tingling in both lips and tongue on 11 September was bilateral and with full awareness, which is the metabolic and drug pattern rather than the seizure pattern. The worsening reading vision in the left eye on 9 September came with intact colour and fields, so it is focus and blur on the new sixth nerve palsy rather than the optic nerve. Saying which symptoms are not tumour is part of the map.

5. Two more that are watch-items rather than map changes. Hiccups with a taste of vomit (12 September) are almost certainly reflux with slow stomach emptying on morphine; they matter only because the lowest part of the brainstem drives the hiccup reflex, and the discriminators that would make it a brainstem sign, trouble swallowing, choking on liquids, a hoarse voice, are all still absent. Pain all down the back (13 September) is most likely mechanical after days largely in bed, but new back pain in someone with a probable malignant bone tumour is a red flag for spinal involvement until shown otherwise, so it stays on the list.

The clivus and its neighbours

The clivus is the sloping bone at the centre of the skull base, behind the nose and in front of the brainstem. Six directions:

The nerves, and the patient's signs in order

Sign Structure How sure Note
Right face pain, over a year Right fifth nerve at its ganglion or in the cavernous sinus wall Definite for the nerve The oldest sign (PMID 8786827, NBK482283)
Right lid droop since July Right third nerve Definite (report names it) The pupil tells whether the nerve trunk is compressed: ask the examiner (NBK526112)
Double vision since late August Right third with right fourth Definite (report names both) Right eye cannot turn in fully; the vertical part is the fourth (NBK537244)
Head pressure and dizziness on straining, from about mid August Spinal fluid pathway at the back of the skull Likely Reported 15 September but present over a month, so it predates the left sixth palsy. Strengthens the raised pressure branch below (NBK482119)
Left eye not turning fully out, 6 Sep Left sixth nerve where it climbs the clivus, or raised pressure inside the head Likely structural; pressure now better supported Both sixth nerves run up the clivus into a small canal, so a midline tumour can reach the second one; a sixth nerve palsy is also the classic false localising sign of raised pressure (NBK430711, PMID 12640051, PMID 39823590). The straining history above is the new weight on the pressure side. Looking at the back of the eyes, and a scan, separate them
Light sensitivity The trigeminal pain pathway Likely Travels with the face pain; not a localising sign on its own (PMID 21467933)
Left "sinus" pain, 7 Sep Left fifth nerve branch, or the sphenoid sinus lining Possible With the left sixth, suggests the tumour crossing the midline
Blocked right nostril, 7 Sep Front edge of the tumour in the sphenoid sinus or nasopharynx Likely (was possible) Now one of six signs on the same axis. Nasal endoscopy (PMID 19193749)
Pain behind the nose, 10 Sep Sphenoid sinus and back of the nasal cavity Likely Same axis
Nose pressure worse lying down, 11 Sep Nasal cavity, congestion or mass Possible Worse flat is the raised pressure pattern, worse standing the low pressure leak pattern; asked rather than assumed
Metallic blood taste lasting five minutes, 11 Sep Blood or secretion draining from the nasopharynx Likely Duration is what moves this off the nerve and drug list. The brief tastes on 5, 6 and 10 Sep stay on that list
Recalled sensation of fluid in the nose, 11 Sep Possible spinal fluid leak through eroded clival bone Possible, unconfirmed Feeling only, or fluid actually running, is the discriminator. A real leak carries a meningitis risk and is a same-day call
Right ear hum on waking, 10 Sep Eustachian tube, blocked from the nasopharynx Possible Same side as the blocked nostril. Otoscopy and a tympanogram settle it (NBK538293)
Right jaw pain, from late 2025, more sensitive 12 Sep 2026 Right fifth nerve, third (jaw) division, which bypasses the cavernous sinus Likely for the nerve; not a new territory CORRECTED 16 Sep: the jaw has been symptomatic for about a year, so 12 September was worsening, not onset. Two divisions symptomatic in 2025 point at the ganglion in Meckel's cave against the clivus rather than the sinus alone (NBK532976, PMID 8786827). Ask which parts of the face are numb, not just painful
Voice sounded unusual, noticed by an osteopath, May 2026 Nerves to the voice box and palate, leaving the skull just below the clivus Possible, character not yet established Referred at the time for a thyroid check. Hoarse or breathy points at the voice box nerve; nasal points at the palate and fits the nasopharyngeal extension; quiet but unchanged in sound is pain, opioid and exhaustion. Swallowing normal, no tongue deviation
Left eye reading vision worse, 9 Sep Focus and blur from the new sixth nerve palsy Likely Colour and fields intact, so not the optic nerve pattern
Hiccups with taste of vomit, 12 Sep Reflux on morphine; the hiccup reflex runs through the lowest brainstem Possible, drug more likely Becomes a brainstem question only with swallowing trouble, choking on liquids or a hoarse voice. None present
Pain all down the back, 13 Sep Most likely mechanical after days in bed Possible, mechanical more likely New back pain with a probable malignant bone tumour stays a red flag until examined
Metallic taste, phantom smell, brief spells Nose or throat irritation, morphine, gabapentin; temporal lobe less likely Possible, cause uncertain Phantom smells occur in 1 in 15 of the general population and rise with the number of medicines (PMID 30128498). A single brief stereotyped sensation can itself be a temporal lobe seizure, so the count matters and the EEG ask stands
Tingling lips and tongue, 11 Sep Metabolic or drug, not the tumour Likely not tumour Bilateral, ten seconds, full awareness. Calcium, magnesium and the gabapentin peak are the three to chase
Rectal bleeding, 12 Sep Diclofenac suppositories, drug induced proctitis Likely not tumour Suppositories stopped
Drowsiness Morphine and gabapentin Likely Drowsiness that outlasts the dose pattern is a pressure or brainstem sign (NBK560875)

Her sequence, fifth nerve pain, then third, then fourth, then the opposite sixth, is the expected order for a tumour in the upper clivus growing into the right cavernous sinus and back across the cistern. In published series of clival chordoma, double vision is the presenting complaint in about a third and a sixth nerve palsy is found in nearly half (PMIDs 28409727, 25594191). The newer signs add a forward axis to that picture, into the sinus and the nasopharynx.

What is not involved, and the sign that would say it was

The arteries

The basilar artery is partly wrapped and both carotids are abutted. Wrapped is not blocked. For daily life this is not a risk that changes anything; for the surgeon it is the central planning problem. Encasement of the basilar lowers the chance of complete removal (13 percent against 42 percent in one skull base series, PMID 23451716) because surgeons leave a sliver of tumour on the vessel rather than risk it, and carotid injury in endoscopic chordoma surgery runs at about 2 percent in the largest series (PMIDs 23695646, 31226887). This is the argument for a high-volume centre and for the surgeon's own numbers.

What to ask at the appointment

Five, in order, and the first three are cheap.

  1. Listen to her voice and look at her palate. Ask her to say "kuh kuh kuh" and then hold "ahhh": a palate that does not lift, or a hoarse or nasal sound, is a lower cranial nerve sign, and one was noticed in May 2026 and never chased. Free, and it is the oldest unexamined sign she has.
  2. Look at the back of her eyes. Swollen discs would settle the raised pressure question that the straining history has now put on the table, and it takes a minute.
  3. Look in the right ear and do a tympanogram. A one-sided middle ear effusion in an adult is a recognised red flag for a nasopharyngeal mass, and it is a two-minute test.
  4. Nasal endoscopy. It answers the blocked nostril, the pain behind the nose and the five-minute blood taste in one look, and it is the same route any biopsy would take.
  5. A repeat MRI, and say what has changed. The last scan is 2 September and six new local signs have appeared since. The specific asks: has the forward extension into the sphenoid sinus and nasopharynx progressed, is the eustachian tube involved, is the third division of the trigeminal nerve or Meckel's cave involved, and is there any sign of raised pressure or of a spinal fluid leak.
  6. Test any nasal fluid if it ever runs rather than is felt. Beta-2 transferrin identifies spinal fluid. This is only if it happens; the sensation alone does not justify chasing it.
Brief for the family · source file em-docs/em-skull-base-map.md · last edited 16 September 2026