Hi there,

I'm going to share my story, and hope it is helpful to those wondering about pregnancy and childbirth with a csf leak.

I have had two concurrent spontaneous csf leaks for seven years. I have been treated both at the Mayo and at the Cedars Sinai in LA. I have had 14 blood patches and 3 fibrin glue patches. I almost had surgery but decided not to, as it seemed like it might worsen my condition in the long run. I live a pretty normal life, but with lots of pain and management, and much less physical activity or moving around than I would like. I don't drive; I don't run; I can barely exercise withou "paying" for it afterwards. Still, I am grateful that my condition is now manageable, and has been for the last four years. Before that I was forced to be flat all the time.

Three months ago, I gave birth to a beautiful daughter. I delivered by c section, under general aneasthetic, due to the existing leaks. Anyone who has had a spontaneous leak should think twice before both having an epidural (for obvious reasons) and a vaginal delivery. In my case, I knew that delivering vaginally would tear my spinal cord apart, because my leaks can be aggravated by any pushing, heaving, etc. The delivery under general went fine, and I healed quickly from the c section.

I felt very very well when I was pregnant for the first two trimesters. In fact, I felt better than I had in seven years. Something about the extra hormones and extra fluids in the body really gave my csf volume a boost. In my third trimester, my leaks (T5 and T12) acted up twice. This was because the weight at the front of me was starting to pull at the back of me. I delivered early, at 35 weeks.

I felt great for the first two months after giving birth. I think I was still on a hormonal high. But last month, the dizziness, headaches, frailness, exhaustion and stiffness returned. It has been a struggle since. I have had to get my mom in to help a lot, and have also hired a nanny. My daughter is now 12 pounds and lifting her from her crib, etc, aggravates my condition.

I am trying to feel like this is a temporary situation -- usually my bad stretches last about a month or two -- but having a baby is a whole new physical world, and the demands on my body are big (I am breatsfeeding as well). Before my daughter, I was very careful and selective with all my movements. Now that is nearly impossible, and I am often reaching the limits of pain and exhaustion. I fear what it will be like as she gets heavier and heavier. I am trying to make peace with the fact that I will soon not be able to carry her at all; that it will be a tough two or two and a half years, and then things will clear up, once she is a walking, talkling person, and I can care for her in a less physical way.

My daughter is certainly worth it, but boy, this is hard!

I would love to hear from anyone else who has babies and a leak. I could use some tips myself!

all the best.