Patient handout

Cerebral Venous Sinus Thrombosis (CVST)

PRODUCTION

1. Your condition

This handout is for cerebral venous sinus thrombosis (cvst). Your care team identified this based on: new severe / progressive headache in young woman on ocp or postpartum (iscvt ferro stroke 2004 pmid 14976332).

Other reasons your team may use this plan: papilledema + headache pattern (isolated intracranial hypertension cvst phenotype; aha 2024 pmid 38284265); new seizure + focal deficit — seizure ≈40% in cvst vs <10% arterial stroke (iscvt pmid 14976332); encephalopathy / coma in young adult — deep venous cvst (straight sinus / vein of galen / internal cerebral veins) phenotype (aha 2024 pmid 38284265).

2. Your medications

Take these medications exactly as prescribed. Do not stop or change a dose without talking to your provider.

Medication	Starting dose	How	When	What it does
enoxaparin	1 mg/kg SC q12h (CrCl 30-50: cautious + monitor anti-Xa 0.5-1.0 IU/mL; CrCl<30: switch to UFH or reduce to 1 mg/kg q24h)	SC	q12h	LMWH preferred first-line in CVST per AHA 2024 (PMID 38284265) and ESO 2017 (PMID 31008314); superior to UFH for outpatient transition
heparin	80 U/kg IV bolus then 18 U/kg/h infusion, titrate APTT 1.5-2× control	IV	continuous infusion	UFH preferred when reversibility / renal-failure / imminent-procedure favour shorter half-life (AHA 2024 PMID 38284265)

Plan: CVST anticoagulation + endovascular + decompression ladder (AHA 2024 PMID 38284265 + ESO 2017 PMID 31008314 + SECRET PMID 37675613 + RE-SPECT CVT PMID 31479105)

3. Your action plan

Use these zones to know what to do based on how you feel.

GREEN — Doing well — stable on anticoag

If you have:

no_new_headache
no_focal_deficit
no_new_seizure
INR_in_range_if_warfarin
no_unusual_bruising

Do this:

Continue maintenance anticoag as prescribed
Keep stroke-clinic + MRV appointments
Avoid estrogen-containing OCP/HRT lifelong
Use only LMWH if becoming pregnant + 6 wk postpartum (call stroke clinic FIRST when pregnancy planned/confirmed)

YELLOW — Caution — call stroke clinic same day

If you have:

new_persistent_headache_x_>24h
minor_nose_or_gum_bleed
INR_>4_or_<2_if_warfarin
missed_anticoag_dose
planned_surgery_or_dental_work

Do this:

Call the stroke clinic / anticoag clinic same day
Do NOT stop anticoag without instruction
Bring medication list to clinic call

RED — Emergency — call 911 / go to ED

If you have:

thunderclap_or_worst_ever_headache
new_focal_weakness_or_speech_difficulty
new_seizure
loss_of_consciousness
major_bleed_GI_or_intracranial
severe_abdominal_or_back_pain

Do this:

Call 911 / go to nearest ED
Bring medication list and anticoag card
Tell ED you have a history of CVST and are on anticoagulation

Call your provider if:

Any red-zone trigger
After any ED visit so stroke team is updated

4. When to seek emergency care

Call 911 or go to the nearest emergency room right away if you have:

GCS ≤8 OR coma at presentation or decline (ISCVT PMID 14976332; AHA 2024 PMID 38284265)(life-threatening)
Straight sinus / vein of Galen / internal cerebral vein thrombosis on MRV (AHA 2024 PMID 38284265)(life-threatening)
Large venous infarct + edema + midline shift + GCS decline (AHA 2024 PMID 38284265 Class I for hemicraniectomy)(life-threatening)
New clinical or electrographic seizure (≈40% in CVST) or refractory status (ISCVT PMID 14976332)
Hemorrhagic transformation within venous-infarct territory on CT/MRI (AHA 2024 PMID 38284265)
CVST occurring during pregnancy or within 12 wk postpartum (ISCVT gender Coutinho Stroke 2009 PMID 19478226)
CVST 4-30 d after SARS-CoV-2 adenoviral vaccine OR after heparin exposure + platelet drop >50% (HIT/VITT) (ESO 2021 PMID 34746428)
Recurrent CVST off anticoag OR breakthrough on therapeutic anticoag (AHA 2024 PMID 38284265)

5. Follow-up

Stroke-clinic 4-6 wk for thrombophilia workup off anticoag; pregnancy counselling — LMWH-only future pregnancy + 6 wk postpartum, AVOID OCP/HRT lifelong; recurrent-CVST risk ≈2-4%/yr; mood / cognition screen (post-CVST depression up to 25%) (AHA 2024 PMID 38284265)

6. Sources

Guideline: 2024 AHA Scientific Statement on Diagnosis and Management of Cerebral Venous Thrombosis (Saposnik et al, Stroke 2024) + 2017 ESO guideline (Ferro Eur Stroke J)