Submitted by Elissa (not verified) on Tue, 05/27/2008 - 1:37am.
I'm 33 years old and had a Spontaneous CSF Leak 3 years ago. I began feeling really horrible in the afternoons for a few days. Dizzy, nauseated, lots of head pain. One night after I put the kids to bed I passed out on the kitchen floor and woke up hours later, disoriented and unable to call for assistance. I KNEW something was wrong then!
I went to my HMO and got "put off" for weeks. They did scans but couldn't see anything. I was sure I had a tumor or something. My sister, bless her, took my two children and kept them busy. I've always been active and well, and these leaks make you feel SICK. I began losing neuro functions when upright (hearing, cognitive, speech, etc) and decided to check myself into ER. Got tossed from hospital to hospital until I ended up at a teaching hospital in Portland, OR. They did fancy, expensive scans, did another (my 4th) blood patch. Nothing worked. So I went home, had my bed put on blocks into a make-shift Trendelenburg position, and there I stayed for another two months. I finally realized that I was going to have to get more proactive, even in my debilitating pain, and at that point, weakness (I had lost 25 pounds lying there wasting away). So I got the name of a great naturopath in Portland and went to him. He prescribed some things he thought would help mend the dura. I'm not a vitamin-popper, but this did seem to make sense! After all, it's broken, and it just might need some assistance in mending. The other thing I did was to think back to how I might have done this in the first place. I kept thinking about my yoga class, and that damned backward roll you do over your neck. I'm a tall girl, 6 ft, and that position never felt right, in fact it hurt. SO, I concluded that I must have torn my dura somewhere up in the cervical spine area, not lower where they had been doing the blood patches. I had my mom go buy a $5 neck cuff at the pharmacy. You know, the kind you wear after a car wreck? I began drinking tons of water, taking my vitamins, forcing healthy foods down (you have no appetite when you've been in bed for 12 weeks,) and I wore that foam neck cuff.
Well, within 3 weeks, one morning, I woke up feeling fine. I could actually tell upon waking that something had happened. It felt like someone had lifted me from the bottom of the deep end of a pool, back up to the surface. That pressure and pain in the head was gone. I literally couldn't believe it. First was a wave of relief. I cried and cried. Then a flood of fear! What if it comes back tomorrow. It was almost a PTSD thing. I STILL have great fear, three years later, that this could happen again. I don't toss my head around, I don't do anything jarring, I DON'T do yoga rolls!
But it's scary, and I feel for each one of you who is going through this, or is supporting someone through this. Keep your hopes up. Believe you can get well. Try new things. Think in basic terms..... how did I do this? I really think that stabilizing my neck is what allowed the tear in the dura to heal. NOBODY with a medical degree had suggested this, but they sure did $50K work of other things trying to "fix" it. Don't rely on doctors to fix it, they really don't know much about these. Stay calm, nourish your body as best you can, consult with a really good Naturopathic Doctor (ND). You will get through this!
I wish I could support others through this, but it's so rare. I remember being so desperate for information, hope...... anything to guide me. Thank you to all of you who share your stories. Don't forget to post your story AFTER you get well. Those mean a lot to people who are suffering.
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Narrative is determined not by a desire to narrate
but by a desire to exchange. (Roland Barthes, S/Z)
Way to go sister!
I'm 33 years old and had a Spontaneous CSF Leak 3 years ago. I began feeling really horrible in the afternoons for a few days. Dizzy, nauseated, lots of head pain. One night after I put the kids to bed I passed out on the kitchen floor and woke up hours later, disoriented and unable to call for assistance. I KNEW something was wrong then!
I went to my HMO and got "put off" for weeks. They did scans but couldn't see anything. I was sure I had a tumor or something. My sister, bless her, took my two children and kept them busy. I've always been active and well, and these leaks make you feel SICK. I began losing neuro functions when upright (hearing, cognitive, speech, etc) and decided to check myself into ER. Got tossed from hospital to hospital until I ended up at a teaching hospital in Portland, OR. They did fancy, expensive scans, did another (my 4th) blood patch. Nothing worked. So I went home, had my bed put on blocks into a make-shift Trendelenburg position, and there I stayed for another two months. I finally realized that I was going to have to get more proactive, even in my debilitating pain, and at that point, weakness (I had lost 25 pounds lying there wasting away). So I got the name of a great naturopath in Portland and went to him. He prescribed some things he thought would help mend the dura. I'm not a vitamin-popper, but this did seem to make sense! After all, it's broken, and it just might need some assistance in mending. The other thing I did was to think back to how I might have done this in the first place. I kept thinking about my yoga class, and that damned backward roll you do over your neck. I'm a tall girl, 6 ft, and that position never felt right, in fact it hurt. SO, I concluded that I must have torn my dura somewhere up in the cervical spine area, not lower where they had been doing the blood patches. I had my mom go buy a $5 neck cuff at the pharmacy. You know, the kind you wear after a car wreck? I began drinking tons of water, taking my vitamins, forcing healthy foods down (you have no appetite when you've been in bed for 12 weeks,) and I wore that foam neck cuff.
Well, within 3 weeks, one morning, I woke up feeling fine. I could actually tell upon waking that something had happened. It felt like someone had lifted me from the bottom of the deep end of a pool, back up to the surface. That pressure and pain in the head was gone. I literally couldn't believe it. First was a wave of relief. I cried and cried. Then a flood of fear! What if it comes back tomorrow. It was almost a PTSD thing. I STILL have great fear, three years later, that this could happen again. I don't toss my head around, I don't do anything jarring, I DON'T do yoga rolls!
But it's scary, and I feel for each one of you who is going through this, or is supporting someone through this. Keep your hopes up. Believe you can get well. Try new things. Think in basic terms..... how did I do this? I really think that stabilizing my neck is what allowed the tear in the dura to heal. NOBODY with a medical degree had suggested this, but they sure did $50K work of other things trying to "fix" it. Don't rely on doctors to fix it, they really don't know much about these. Stay calm, nourish your body as best you can, consult with a really good Naturopathic Doctor (ND). You will get through this!
I wish I could support others through this, but it's so rare. I remember being so desperate for information, hope...... anything to guide me. Thank you to all of you who share your stories. Don't forget to post your story AFTER you get well. Those mean a lot to people who are suffering.