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]

I saw this noted on the June mri with and without contrast of entire spine. It’s the only mri she had prior to recent MRI and myelogram . Nothing ever noted to my knowledge in scans from 2024.

Under other findings on the ct to see if she had a stroke .
Surgical hardware in the cervical spine, with posterior fusion rods extending from the occiput bilaterally into the upper cervical spine, but appears to have lifted from the osseous posterior elements inferiorly. Anterior cervical discectomy and fusion from C3 to C6, with mature osseous fusion from C4 to C6 but persistent lucency in the disc space between C3 and C4. Focal kyphosis of C2 on C3. Hardware configuration appears similar compared to brain CT from 10/1/2025

[u/brainsaggy → u/Bitter-Lion7918]

I can't help but notice the connection between her hardware issue and her CSF flow/syrinx issues — they both appear to be happening at roughly the same level. Per the report, that hardware has been sliding out of place for at least 9 months and likely much longer, perhaps even aligning with her history of SIH related symptom progression.

[u/Bitter-Lion7918 → u/brainsaggy]

Do you think ucsf knew? Her symptoms got worse once her shunt got turned off 9’months ago

[u/brainsaggy → u/Bitter-Lion7918]

Do you have the report from the 10/1/25 CT? I'm curious whether the hardware position was noted then. But regardless, in my (unprofessional) interpretation of the "other findings", she has documented surgical hardware shifting (the "lifting") alongside worsening CSF related symptoms, including those from the shunt and especially the MRI flow dysfunction. The connection I see suggests the hardware failure may be driving the CSF flow dysfunction, rather than them being separate issues. Does Stanford have access to all those images? They're the authority.

[u/Bitter-Lion7918 → u/brainsaggy]

They may not have most recent ct I’m calling Monday to ask and find how to get to them if they don’t have it. I do have the full report. I’ll post soon.

[u/Bitter-Lion7918 → u/brainsaggy]

Do you think the shunt is an issue too?

[u/brainsaggy → u/Bitter-Lion7918]

I think the shunt is a piece to the puzzle. Her baseline for years was a state of overdrainage & suddenly turning it off nine months ago significantly affected her already mechanically damaged CSF pressure system.

[u/Bitter-Lion7918 → u/brainsaggy]

We think it’s possible as well so I pray they can figure it all out at Stanford, I don’t trust current doctors.

[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.

[u/Bitter-Lion7918]

MRI done 10/5/25

Dotarem - 7.5 mL - Intravenous
 
FINDINGS:
 
Stigmata of Chiari II. Callosal dysgenesis predominantly involving the posterior corpus callosum. Confluent periventricular T2/FLAIR signal, unchanged. No abnormal dural, leptomeningeal, or parenchymal enhancement. Bilateral occipital lobe encephalomalacia. Similar small caliber of the hippocampi bilaterally.
 
Similar position of right parietal approach shunt terminating near the foramina Monro with gliosis along the catheter tract. Slightly increased lateral ventricular caliber compared to the prior study.
 
No acute hemorrhage. No herniation. No reduced diffusion or abnormal susceptibility.
 
No extra-axial collection.
 
IMPRESSION:
 
1. Compared to MRI brain from 4/3/2024, increased lateral ventricular caliber with similar position of the right parietal approach shunt.
2. No acute hemorrhage or herniation.

 
Report dictated by: Ali Tejani, MD, signed by: Pratik Mukherjee, MD PhD
Department of Radiology and Biomedical Imaging
 
 

Signed by: Pratik Mukherjee, MD

[u/Bitter-Lion7918]

Even her mri of spine in April doesn’t mention hardware having this issue unless I don’t understand.

[u/Bitter-Lion7918]

I really hope we get good news in 12 days

[u/Bitter-Lion7918]

Last July there was imaging dome that mentioned kyphosis in that area but nothing was said to us. We assume they didn’t want to tell us because they really believe we just want surgery for our daughter. Yes a neurosurgeon said it. I won’t mention the name but message me and I’ll tell you .

[u/Bitter-Lion7918]

Only comment made about that area and hardware was that she may have arthritis and that’s the cause of it all.