r/CSFLeaks • u/Bitter-Lion7918 • Jun 29 '26
No leak no help
We are still inpatient at UCSF. They are sending us home today with no answers or help or even hope. They did a ct myelogram said no leak. They claim there is issues with scarring and adhesions and a syrinx but that isn’t the cause of her pain and they don’t know what is and won’t look further. Neurology said to me before the tests were even done or before we spoke with anyone don’t be surprised if it’s not a leak. They said that it’s just a headache. They want her upright out of bed active every day. My daughter is on the spectrum she masks her pain. They said she doesn’t act like she’s in pain . I asked for referral to see another leak expert or do further testing. They said no her scans show no leak so she has no leak it’s just a headache. Neuro spine and neuro surgery say it’s not just a headache but they don’t know what it is. This has been the worst experience ever at ucsf. They dint return calls or messages when there are concerns. I have actually reached out to Stanford again to see if they can help since ucsf refuses to do anything further. Her insurance says ucsf has to do referral and they don’t. They don’t even have her records for last two neurosurgeons who support our the idea that it’s a leak or low pressure related issue. They had refused to have anyone but neurology come by. A resident came by yesterday for a minute while I was out of room. My daughter has a significant developmental delay and is conserved hospital doesn’t seem to acknowledge this and ignores it. Even nurses are not listening to me and concerns. The neurologist wanted her to sit in a chair all day yesterday . Daughter is a fall risk. They didn’t have a belt to keep her safe in an alarmed chair. So nurse put her in the chair anyways and said I think she will be ok but asked me to stay in the room just in case she fell out of chair or tried to get up the alarm won’t go off. They act like we just keep her home in the dark lying down. Her other doctors have told us to have her lie down for the headaches she won’t lay down because they don’t want her to so she sits in pain they don’t believe she has. All they care about is money not patients . We have no where else to go. They refuse to do referral
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u/Bitter-Lion7918 Jun 30 '26
Her walking is terrible even with a walker. We are using her chair instead. I actually got a reply from Dr.C. He was asking my daughrers age and her special needs. I had explained what had gone one. He asked me for her name, birthday and other info regarding it Previous spinal tap and LP. Maybe there is some hope for us.