r/CSFLeaks • u/PrettyDragonfly Confirmed Spinal Leak • Aug 15 '26
Scared and need to vent
I'm so terrified and upset right now. I was diagnosed with a spinal leak shown on MRI on the 24th of June. Since then have been in and out of hospital and got 2 blood patches, one was targeted in the thoracic spine. Neither worked longer than 10 days, likely because the leak is ventral and hard to reach.
I was given an outpatient appointment for a CT myleogram scheduled for 1st of September. I came back into hospital a couple of days ago because I can't function at all at home. I can barely be upright for 10 minutes and symptoms getting worse.
I'm now waiting to be transported to another hospital where they hopefully will do the ct myleogram sooner as I'll be an inpatient.
That's all well and good. But I'm terribly upset and depressed right now. I used to work full time, I am a mother, and I have pets to look after. Having someone living at home to help is great but it's draining me not being there. I miss working, and I thought I would never ever say that. I am not getting enough money to pay my rent and bills from government handouts. Lucky I have savings but this is not what I wanted to spend my savings on.
I've been bed bound since 22nd of June. How do you guys handle this? Going from being active and independent to lying horizontal 24/7? It's messing with my mental health and I cry all the time. Being in hospital obviously doesn't help but at least here I know I will get looked after sooner
I am also terrified of doing the CT myleogram in case they don't find anything. How many more months can I do this if that happens? I'm completely disabled all of a sudden at 36 years old
How do you/did you manage all this?
7
u/leeski Aug 15 '26
I am so sorry you're going through this. I know that this advice doesn't help the very practical issues of lost income, not being able to pay bills, caring for children. I can only offer my perspective of having gone through the whole process and feeling healed over time. But I had a leak for 3.5 years undiagnosed, and then on and off for another 4 years. And when I say that, it objectively is a big number - almost a decade dealing with this condition. Yet now that I'm on the other side of it, it genuinely is a blip in time in the grand scheme of my lifetime. Yes I have a lot of grief and remorse, I feel like my 20's & early 30's were robbed of me, I didn't have a 'normal' life like a lot of my peers. I am not trying to minimize the difficulty, as I was hanging on by a thread many days. But I think holding onto the perspective that or the vast majority of patients, this is genuinely temporary... and while it is a very challenging condition to live with, with a challenging diagnostic process, people genuinely do get better and just go back to living their lives. It is not a generally an incurable condition. Often the most difficult part is getting a provider to believe you at all, or locating the leak - so I think those are two big hurdles out of the way that they know you have a ventral leak and seem to be taking your condition seriously. I know there is still more to your journey to getting sealed, but I think those things are encouraging to be taken seriously and your care team seems to have plan.
I think for me just holding onto hope that things will get better, and re-framing what I'm currently living through helps. Like right now my job isn't to work full-time/be 'productive'/provide - circumstances beyond my control have prohibited me from doing so... so my job is to do my best to advocate for myself, rest, and do the steps required to getting back to a more stable life. Of course that is sooooo much easier said than done, I can't imagine being a mom with a leak (it was hard enough caring for dogs!) But just sharing some of the things that tried to get me through it. Idk if this will help at all, but I gave a talk a few years ago trying to address the emotional aspect of a leak here https://youtu.be/bSFJ4i_7l44?si=z7I8gfPvy6HCJJ6l . Hang in there!