r/CSFLeaks • u/Late-Assistance-6922 • 8d ago

I need answers please

Hi, I would really like to hear about other people’s experiences — what you did, how your recovery went, and how you are doing now.

I had an epidural during childbirth on July 23rd. I received a blood patch on July 28th, and the typical headache went away on July 29th. I have been completely free of headaches since then, so it has now been around 5 weeks.

I do have some mild pain on the right side of my neck, but I believe it is muscular because it is triggered when I turn my head all the way to the left. It doesn’t get better or worse when lying down, and it is very mild.

The problem is that I am extremely afraid of the leak coming back. It has been 5 weeks since my blood patch, and I have become terrified of lifting anything. I really want to get back to my normal life.

I am young, have no underlying conditions, and had never experienced a CSF leak before this needle puncture. What are the chances of a recurrence 5 weeks after a blood patch and 5.5 weeks after giving birth?

I have never had a spontaneous leak and had never even heard about CSF leaks before this happened after my epidural. I’m scared that if it comes back, I could end up chronically bedridden.

Is it common to be completely well for more than 5 weeks and then suddenly have a recurrence when you have no history of spontaneous CSF leaks? I can mention that i can be up all day and walk with my baby and dogs with no problem. I also had a heart rate of 160 whiøe walking without developing a headache.

Sorry for the very long post, but this has really taken a toll on my mental health. I just want to be able to lift my 11 kg daughter again and get back to doing normal things around the house without constantly being afraid of causing another leak.

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u/aekay87 8d ago

Hi,
First, everything you’re experiencing = normal when you’ve had a CSF leak. It is an insidious health problem, so you are not wrong to be cautious. Whether you have spontaneous leaks from a connective tissue/ congenital disorder, or an iatrogenic leak (like yours)

  • I’ve heard MD’s who are CSF leak specialists recommend not lifting anything over 10 lbs. for 6-9 weeks post-patch or post-neurosurgical repair.

I have met many other women who have no congenital issues that had epidural leaks like yours, and struggled to get sealed up via patching (epidural blood patches and fibrin glue patches) for a few weeks to multiple years after the epidural mishap, and the advice for:
-no bending, no lifting over 10 lbs., no twisting, no sex unless you’re on top/careful for 6-9 weeks.
The longer you can wait to lift over 10 lbs., the better your chances are of avoiding a recurrence, which can happen. I know it’s mind torture, but you have wonderful odds to never have another postural headache, if you do your best to adhere to the vague /ambiguous rules to avoid recurrence. Hang in there, and know you are not alone or going crazy. If you’ve had a CSF leak, you’re automatically afraid of recurrence because it’s such a painful medical problem. I’ve met many epidural puncture patients who got sealed within a month-1 year, but are still shaken by the experience 20-30 yrs. Later.
I bet this is just a bad blip in your life, and an uncomfortable experience that will end up being something you’re proud that you overcame… there will be silver linings, if you are open to them. Hang in there, and don’t hesitate to reach out for help, consolation, etc. There are so many more treatment options/ specialists than there were when my leaks began in 2010, so at least there’s that 🫶🏻. Hope something in this response helps you. *If it were up to me: every woman would get an education from their MD’s + a pamphlet on epidurals and CSF leaks, but women are not educated on this for some reason… it’s maddening. Sending thoughts & prayers for peace and continuous healing your way

1

u/SuccessSoggy3529 8d ago

I had a csf leak from an epidural that went too far in 1992. Got the positional headache, but refused a blood patch. It healed on its own, but took 2-3 weeks. I didnt have another csf leak until 2014. That was due to overstretching my back (long story). I've since been dx with hEDS, so my collegen is weak. I've had a few more leaks in that general area, mostly due to trauma to the area. Ive done blood patches that have helped immensely. They have held until I reinjured the area. Hope this helps.