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CSF leaks and pregnant

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Old 03-06-2011, 08:07 PM   #1
Lindsey28
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Default CSF leaks and pregnant

Hi. I was daignosed with spontaneous CSF leaks about two years ago. I woke up one day in extreme pain and the only way to get relief was to lay down. After a few weeks and numerous hospitals and neurologist visits and tests I finally found a doctor who helped me. I had a myleogram done and discovered multiple leaks in my spine. I was told that there was a doctor out in California that could do surgery and possibly repair all the leaks. Before any of this happened I fortunately started feeling much better and for about a year now have been headache free. I still feel pressure every now and then but with extra fluid intake and caffeine intake I can function normally. Anyway, my concern now is that I am pregnant. I haven't been consuming as much caffeine because of that and I'm also very scared that the weight gain will affect my condition. Has anyone ever been pregnant with leaks? I've noticed lately that I can feel the pressure more often. I'm not sure if that is even the right way to describe it but that is what it feels like. Any input would help. Thanks!!
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Old 09-24-2011, 12:12 AM   #2
35weekheadache
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Default Pregnant with a CSF leak

Hi Lindsey28,

I hope your pregnancy is going well. I just read your post and thought I'd share my story. I was diagnosed at 35 weeks pregnant with a spontaneous CSF leak. I had severe headaches with vomiting for about a week before my diagnosis by a neurologist. MRI scans showed that I was leaking CSF in my thoracic spine region. I was admitted to hospital and had a bloodpatch the next day. It worked! I was headache free. I was told to take it easy and not do any heavy lifting or straining, which was fine....except I was due to have a baby in a month! I was told that by the time the baby was due the bloodpatch should be healed up and it shouldn't be a problem. Well, it was. And still is. The headaches returned the day after I got home with baby. The headaches were a bit different in that they mostly seemed to start at the back of my head/neck and progress from there, whereas before they were mostly frontal headaches. I thought I'd try Physio and massage therapy invade the headaches were related to breastfeeding. Nothing helped except for laying down. So, after 6 weeks of pain (and a terrible time trying to take care of my new baby!) I went back to the neurologist. He told me it was unlikely that it would have happened again and sent me home for conservative treatment of bedrest (ya right, not with a baby!) and fluids. Well after the two months of severe headaches, I couldn't take it anymore and went back into hospital and had another bloodpatch. It seemed to help at first, but the headaches returned within 5 days. I am still having daily headaches. They are intermittently horrendous or tolerable. I don't want to have to go into hospital for another bloodpatch, as it's extremely hard with baby, but I'm not sure if I can functionally parent like this.
Have you discussed with your doctor/obstetrician about delivery options? I didn't have an epidural because of the risk of another CSF leak (I didn't want two!) but now I don't know if that was the right decision, as you may strain less with an epidural during delivery? I don't know what the best route to take would be. I wish you luck!
I would also like to know if anyone has had a spontaneous CSF leak occur in pregnancy? Has anyone had a successful bloodpatch after a failed one? And...have there been many successful CT myelograms where the site of the leak has been determined?
Cheers,
Mel



Quote:
Originally Posted by Lindsey28 View Post
Hi. I was daignosed with spontaneous CSF leaks about two years ago. I woke up one day in extreme pain and the only way to get relief was to lay down. After a few weeks and numerous hospitals and neurologist visits and tests I finally found a doctor who helped me. I had a myleogram done and discovered multiple leaks in my spine. I was told that there was a doctor out in California that could do surgery and possibly repair all the leaks. Before any of this happened I fortunately started feeling much better and for about a year now have been headache free. I still feel pressure every now and then but with extra fluid intake and caffeine intake I can function normally. Anyway, my concern now is that I am pregnant. I haven't been consuming as much caffeine because of that and I'm also very scared that the weight gain will affect my condition. Has anyone ever been pregnant with leaks? I've noticed lately that I can feel the pressure more often. I'm not sure if that is even the right way to describe it but that is what it feels like. Any input would help. Thanks!!
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Old 02-01-2012, 10:16 AM   #3
smireilles
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Default new mom with old csf leak

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.





Quote:
Originally Posted by Lindsey28 View Post
Hi. I was daignosed with spontaneous CSF leaks about two years ago. I woke up one day in extreme pain and the only way to get relief was to lay down. After a few weeks and numerous hospitals and neurologist visits and tests I finally found a doctor who helped me. I had a myleogram done and discovered multiple leaks in my spine. I was told that there was a doctor out in California that could do surgery and possibly repair all the leaks. Before any of this happened I fortunately started feeling much better and for about a year now have been headache free. I still feel pressure every now and then but with extra fluid intake and caffeine intake I can function normally. Anyway, my concern now is that I am pregnant. I haven't been consuming as much caffeine because of that and I'm also very scared that the weight gain will affect my condition. Has anyone ever been pregnant with leaks? I've noticed lately that I can feel the pressure more often. I'm not sure if that is even the right way to describe it but that is what it feels like. Any input would help. Thanks!!
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Old 08-20-2012, 12:06 PM   #4
celesteandjoe
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Default

Quote:
Originally Posted by Lindsey28 View Post
Hi. I was daignosed with spontaneous CSF leaks about two years ago. I woke up one day in extreme pain and the only way to get relief was to lay down. After a few weeks and numerous hospitals and neurologist visits and tests I finally found a doctor who helped me. I had a myleogram done and discovered multiple leaks in my spine. I was told that there was a doctor out in California that could do surgery and possibly repair all the leaks. Before any of this happened I fortunately started feeling much better and for about a year now have been headache free. I still feel pressure every now and then but with extra fluid intake and caffeine intake I can function normally. Anyway, my concern now is that I am pregnant. I haven't been consuming as much caffeine because of that and I'm also very scared that the weight gain will affect my condition. Has anyone ever been pregnant with leaks? I've noticed lately that I can feel the pressure more often. I'm not sure if that is even the right way to describe it but that is what it feels like. Any input would help. Thanks!!
Hi Lindsey....I had read in another post that you knew a Doc in Philadelphia who is good at working with these leaks....could you give me his name?? You can reach me at:celesteandjoe@yahoo.com It would be much appreciated as I am at a loss with who to go to thank you so much.
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