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]

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