I posted about a month ago that we were concerned my daughter has a csf leak. We did the 48 kay flat test because my daughter wanted to get it over with. She’s has sense been lying flat or In her recliner all the time.
She had a full spine mri with and without contrast 2 weeks ago. It was ordered by current surgeon at ucsf. They suddenly seemed concerned after tremor appeared and that she had relief lying flat for 48 hours. Her referral was sent to Dr. Carroll.
About two weeks ago I sent the results of the test but a few days ago they emailed asking for it again saying they didn’t get it. I sent it again twice.
We met with surgeon last week over telehealth and he acted like he never thought of my daughter having a leak even thought I have told them what a previous surgeon had said and it’s in her records . He mentioned she has EDS . But they never acted like they knew what it was ever nor how to handle it. He was in a rush to get her referred for ct myelogram and patch. He said she has a leak in neck and maybe her lower back. Last full mri of spine was 2 years ago and no issues. Last full MRI of brain with and without contrast was 6 months ago. We were told normal but we dont trust them.
We are going to wait for Stanford. We aren’t comfortable with them. We had a appt with a complex neurologist a few days ago from ucsf via telehealth. She was rude and condescending. She didn’t believe my daughter has Eds based on exam through my phone. My daughter wasn’t able to do some of the commands as she didn’t understand. She doesn’t believe she has POTs she does think she has a leak or multiple. She said she may have two tupes either dural kr a cat fistula. She wouldn’t answer if having shunt off for two months made her symptoms and her leak worse and she wouldn’t answer. She only addressed leak for a few minutes the rest of the hour was focused on meds , trying to dismiss symptoms and trying more meds she has already tried and even trying meds after her leak is fixed. She was bothered when I said we will wait for Stanford to do testing and try to fix leak.
and very complicated but they are the best at fixing it.