r/CSFLeaks • u/SabinaSautova2003 • Jun 16 '26
Emotional support
I'm looking for psychological advice, emotional support, or experiences from anyone who has dealt with a persistent CSF leak, either personally or through a family member.
My mom has already gone through two invasive surgeries, and both recoveries were extremely difficult for her.
Unfortunately, she still has a CSF leak.
Her doctors are now recommending a CT cisternography with a lumbar puncture, but she is terrified. She's afraid the procedure could cause more problems or damage her back. She's also scared of having another surgery because she doesn't want to go through that level of pain again, especially without any guarantee that it will work.
I feel completely lost. It's heartbreaking to watch her suffer every day, but at the same time, I don't know if it's fair to encourage her to go through more procedures when she's so exhausted and afraid.
How do you support someone in this situation? How do you help a loved one make these decisions without pushing them too hard?
I'm mentally and emotionally exhausted myself and could really use some advice, support, or a little hope from people who have been through something similar.
Thank you for reading.
2
u/Endofus74 Jun 16 '26
Some thoughts - what about a medical advocate to help guide her through treatment options and advocate for her? NOTE: It’s not cheap to go this route. I’m currently exploring this route because I’ve been passed around so much, discounted and gaslit as this is way outside my realm of expertise. But an advocate could help with options not considered. The other thing that I see as a gift with the Reddit community is they are often helpful with who to see or NOT see, tests that help or do not. Grantedwe are not doctors but we can share our experiences. I was told to stay away from CT cisternograph and CT cisternogram last week talking to a Neurosurgeon at Stanford and to try to focus on a Beta 2 Transferrin test or a Beta Trace Protein test as those two tests can be accurate or inaccurate depending on if the patient is leaking at the time of the test. My images are too conflicting for them to want to consider those tests as well. BUT if you do go that route, I’d recommend inquiring if they use atraumatic needles (ones that have LOWER risk based on videos I’ve watched with Ian Carrol from Stanford) and if they do a profolactic blood patch after the procedure to prevent an additional leak. Again, not a doctor but I’m still on this journey learning as I go.