Sorry I’m a bit late but here is a summary of my visit with Dr. Hepworth.
Assessment and Plan
The following list includes any diagnoses that were discussed at your visit.
Assessment Note
Tyler’s Health Issues and Treatments
Edward and Tyler reviewed a CT scan of Tyler’s head, focusing on his vein anatomy and potential
issues. They discussed how Tyler’s left jugular vein appears smaller and more constricted than the
right, which Edward suggested could be contributing to cognitive issues and headaches. Edward also
pointed out a fluid collection in Tyler’s left nasal cavity, which he suspected could be due to a skull
fracture. They agreed to further investigate this finding.
CSF Leak and Venous Treatment
Edward explained to Tyler that his CT scan showed an old skull fracture from a 2012 concussion and
suggested the presence of a CSF leak in the roof of his nose, which could be treated as a sinus
infection for insurance purposes. Edward proposed addressing both the leak and the venous
insufficiency simultaneously to provide symptom stability, acknowledging the complexity of the issue.
Jugular Vein Stenosis Treatment Plan
Edward and Tyler discussed the results of a Doppler study showing irregular flow velocity in Tyler’s
left jugular vein, likely due to stenosis caused by the styloid and surrounding lymph nodes. Edward
suggested that Eagle syndrome surgery, specifically a styloidectomy, could help address the issue.
They also briefly touched on the possibility of checking for Lyme disease, though Tyler reported
negative tests from a few years ago. Edward proposed an action plan involving fixing the left jugular
vein through surgery and ensuring no distorted anatomy or inflammation is present.
Nasal Roof Leak Surgery Discussion
Edward explained the surgical procedure for fixing a leak in the roof of the nose, which involves
examining the bony defect and making a judgment call on whether to reconstruct the roof aggressively.
He mentioned that while some doctors may be reluctant to fix leaks that are not obviously singular
cause broken, he performs this operation 6-8 times a week with a success rate of less than 1% for
nerve injuries. Edward also discussed alternative treatments using blood thinners, diuretics, and
platelet inhibitors, but noted that these treatments can sometimes make leak symptoms worse.
Understanding Tyler’s Medical Condition
Edward discussed Tyler’s medical condition, explaining that symptoms of Eagle syndrome and CSF
leak have been present since at least 2013. He described how jugular vein compression and histamine
production can lead to various health issues over time. Edward advised against intracranial stenting
before surgery and explained that CT myelograms are not effective for detecting CSF leaks. He
suggested using MRI with prolonged T2 sequence to visualize the leak and sinus disease. Edward also
mentioned the possibility of EDS being a contributing factor to Tyler’s condition, but emphasized that
it does not condemn him to a lifetime of symptoms.
Recommendations
-CTV to assess intracranial and extracranial venous outflow and evaluate pressure gradients.
-MRI Cisternogram with <1 mm slice thickness to correlate with prior CT findings and evaluate for
possible CSF leak
-pursue sinus surgery as sinus disease was noted on all imaging + include CSF leak repair + left
jugular vein decompression
Follow-Up
Follow up via telehealth or in person with Dr. Hepworth.
Based on current findings, anticipate that surgical intervention may be recommended to address both
vascular and neurogenic components of compression.
Clinical Considerations / Impression
-Persistent left ethmoid sinus fluid pooling observed on all imaging; lack of response to antibiotics
suggests this is unlikely infectious.
-Findings suggest a transverse fracture of the posterior ethmoid roof (left)
-If the defect were to resolve with conservative or pharmacologic management, it would typically have
done so by now.
-suspect a CSF leak occurring concurrently with venous outflow obstruction.
-excess histamine contributing to the patient’s symptom cascade.
-POTS is likely secondary to impaired venous outflow due to jugular vein compression.
-history of pseudotethered spinal cord noted in consultation with Dr. Pedrefina.
***Intracranial venous stenting is not recommended at this time; venous outflow obstruction should be
addressed first.
- CSF leak
- Intracranial hypertension
- POTS (postural orthostatic tachycardia syndrome
My full thread is here…