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
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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