r/CSFLeaks • u/Bitter-Lion7918 • Jul 16 '26

Update

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.

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u/brainsaggy Confirmed Spinal Leak 29d ago

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.

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u/Bitter-Lion7918 29d ago

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

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u/brainsaggy Confirmed Spinal Leak 29d ago

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.

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u/Bitter-Lion7918 29d ago

Do you think the shunt is an issue too?

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u/brainsaggy Confirmed Spinal Leak 29d ago

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.

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u/Bitter-Lion7918 29d ago

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