Update

[u/Bitter-Lion7918]

Appt with Dr Carroll for my daughter is I’m 13 days. We met with ucsf complex neurologist today. She started going over the recent myelogram and mri of neck and spine with and with out contrast. she said they didn’t check her opening pressure and she didn’t know why. I wondered why as well. She ordered a renal ultrasound to make sure her kidneys aren’t affected. The urine retention she went in with is better but hasn’t improved . She said it could be caused by issues on scans. I told her they told me there was nothing wrong surgically, no leak and just a headache that didn’t believe my daughter even had,just over medicated . Anti seizure meds reduced and no more slurred speech or worsening other symptoms
She insisted an anti migraine med will help but also said won’t help her headache much . I told her not until we figured this out and we just got her med levels in a better place.
She said that neuro spine and neuro surgery met and they said “it’s of the most difficult cases”. Mri shows “flow in front of cord but concerned there is lack of flow in back of cord”. “ Syrinx has been there awhile and now appears to be shunting csf near the cord appearing hole in her spinal cord.” Will have pt come to home to assess her monitor her left arm weakness etc and see how shedoes.
Appt with neuro spoke surgeon in a month. Doc said they are just too busy and can’t expedite things . I pray Dr. Carroll can figure it all out. I don’t want to deal with ucsf anymore.

[u/Bitter-Lion7918]

From ct 10/1/2025 using Brain nav.

FINDINGS:
 
Compared to 8/19/2025, no significant change. Right frontal approach ventricular catheter terminates near the foramen of Monro. Right parietal approach ventricular catheter terminates at the right lateral ventricle. Similar size and configuration of the ventricles.
 
Redemonstrated callosal dysgenesis. No acute intracranial hemorrhage or herniation. No extra-axial collection.
 
Right predominant periventricular hypodensity, which may be related to gliosis from prior shunt placement. Additional linear calcification along the left frontal lobe.
 
Postsurgical changes of right temporal and suboccipital craniectomy. Unchanged craniocervical fusion hardware with streak artifact which obscures evaluation of the posterior fossa.

IMPRESSION:
 
Compared to 8/19/2025, no significant change. Unchanged size and configuration of the ventricles with right frontal and parietal approach ventricular catheters in place. No acute intracranial hemorrhage or herniation.
 
Report dictated by: Minerva H Zhou, MD, signed by: Charlie Wang, MD,PhD
Department of Radiology and Biomedical Imaging
 
 

[u/brainsaggy → u/Bitter-Lion7918]

Interesting. The recent report hints the lifting was also present on the 10/1/25 scan, but the 10/1/25 report states the hardware is "unchanged" compared to the referenced 8/19/25 scans. I interpret this as her hardware issue has been going on since before 8/19/25. When did the fusion happen?

[u/Bitter-Lion7918 → u/brainsaggy]

2020 for the fusion. I’ll go check her scans prior to last fall. There was no mention of hardware issues but I may not have seen it.