u/Grand_Reality4063

Hi everyone,
I’m 22 years old and I was just told yesterday that my MRI shows slit-like ventricles, confirming a CSF leak. I’ve had typical CSF leak symptoms for about 1.5 months now. I also have a batch of other chronic illnesses, that may be coming from there, but not sure yet.
The complicated part is that I also have hypermobility (not sure if its Ehlers danlos) , which internet say makes a standard blood patch less likely to work or hold. I haven’t had a blood patch yet ,I’m still waiting to get into a specialized centers
I’d really love to hear from anyone who has been in a similar situation.
Especially if you have hypermobility :did the blood patch or fibrin glue patch work for you, and how many did it take before it held? Did you need a targeted patch rather than a blind one, and is there anything you wish you had known going in?
Thank you 🙏

Hi everyone,
I’m 22 years old and I was just told yesterday that my MRI shows slit-like ventricles, confirming a CSF leak. I’ve had typical CSF leak symptoms for about 1.5 months now. I also have a batch of other chronic illnesses, that may be coming from there, but not sure yet.
The complicated part is that I also have hypermobility (not sure if its Ehlers danlos) , which internet say makes a standard blood patch less likely to work or hold. I haven’t had a blood patch yet ,I’m still waiting to get into a specialized centers
I’d really love to hear from anyone who has been in a similar situation.
Especially if you have hypermobility :did the blood patch or fibrin glue patch work for you, and how many did it take before it held? Did you need a targeted patch rather than a blind one, and is there anything you wish you had known going in?
Thank you 🙏

Hi everyone,
I’m 22 years old and I was just told yesterday that my MRI shows slit-like ventricles, confirming a CSF leak. I’ve had typical CSF leak symptoms for about 1.5 months now. I also have a batch of other chronic illnesses, that may be coming from there, but not sure yet.
The complicated part is that I also have hypermobility (not sure if its Ehlers danlos) , which internet say makes a standard blood patch less likely to work or hold. I haven’t had a blood patch yet ,I’m still waiting to get into a specialized centers
I’d really love to hear from anyone who has been in a similar situation.
Especially if you have hypermobility :did the blood patch or fibrin glue patch work for you, and how many did it take before it held? Did you need a targeted patch rather than a blind one, and is there anything you wish you had known going in?
Thank you 🙏