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New Member
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Join Date: Oct 2011
Posts: 4
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New Member
Join Date: Oct 2011
Posts: 4
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Spontaneous Spinal Fluid Leaks
I first experience a spontaneous spinal fluid leak about 8 years ago. That one was fixed and everything was OK for two years and then I started having symptoms again. Each one has had a different set of symptoms, it's been a crazy adventure. The very first one as soon as I would sit up I would have excruciating headaches and they would go away if I laid back down. The first doc I saw tried to tell me I had a Chiari's Malformation but I had one symptom and this one symptom did not appear on the Chiari's list of symptoms. At this time I was in high school so my parents insisted I be transferred to a better hospital. I was transferred to Duke and the doc that saw me immediately said spinal fluid leak! I just waited it out taking caffeine pills and the headaches went away in about a month.
I had one again about a year and a half later but before I could make it to the doctor to have it patched I was in a car accident and during the time I was laying low from that it fixed itself. Everything was all peachy for 5 years then one afternoon I have a headache, these headaches were all too familiar and I held an experiment and made a trip to starbucks and drank a beverage with an extra espresso shot and away the headache went. I made an appointment with my neurosurgeon and he sent me to a radiologist who dealt with the leaks a lot. She did a patch with we thought was successful.
About a month later I started having major back pain, it was bad. I went to see someone at a Back Institute and an orthopedist who specialized in scoliosis correction to make sure nothing was wrong with the hardware I had from a previous scoliosis correction. Nothing was wrong and nothing worked to make the pain go away and during this time my left hand had just about completely stopped working. I had a scan of my neck and there was a big pocket of fluid and at this point the orthopedist said this was a neurological problem and sent me to my neurosurgeon. I was then sent back to the radiologist and she did a milogram to find the leaks, she found one really big leak, this time she used the glue instead of my blood. Everything seemed peachy for 2 weeks and the back pain came back, this time I had the radiologist info so I didn't have to go to my neurosurgeon I could just call her.
I went in to see her and she said the leak she repaired 2 weeks before may have been masking other ones so we did another milogram and low and behold I had 9, yes 9 leaks. She patched those, I had an allergic reaction to the glue (which is somewhat common after the first time it's used on you because it's not matched to your blood type, it doesn't have to be) and so far everything has been good.
I have a connective tissue disorder called Marfan Syndrome and lucky me your dura has the same problem as your connective tissue, it can't hold it's form as good as a normal person. I have been doing some research and trying to find ways to prevent the leaks, this is not something I want to deal with every 1 to 2 years or more frequently than that.
Has anyone found anything in regards to prevention? Are there supplements that can help your Dura?
Also, a few of you have commented on how uncomfortable the test is to locate them, I have had milograms to test my pressure and find mine, I don't think anyone has mentioned that. I would not say they are overly uncomfortable. I really don't feel any of it, the worst part is the burning from the numbing medicine and every time that I've had one so far when they take it out it hits a nerve and I kick my right leg unintentionally. Which is more amusing than anything.
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