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C.S.F. Leak - Tonsillar Herniation - Chiari I Malformation
My younger sister (25) had a small brain hemorrhage nearly 7 years ago, around the same time she had a benign tumour removed from her stomach. Some where along the line she developed a C.S.F. leak whether it was a result of the brain hemorrhage, the stomach tumour or a lumbar puncture no one seems to know.
The professor diagnosed her with: C.S.F. Leak, Tonsillar Herniation, Chiari I malformation, begin intercranale hypertension. I would like to understand exactly what these terms mean.
They cannot find the leak and have tried her on Caffine drip, numerous scans to try and locate the leak, and various medication. We are now waiting to hear from the doctor who is treating her what is the next medication she will try. I know blood patches have worked for some people but understand this is a last resort?
My sister struggles with a restless leg type syndrome as she only gets respite when lying flat - she suffers with extreme headaches which no painkillers seem to touch. She has a clear fluid that leaks from her ear / nose. SOmetimes the pain gets incredily bad and she has a nose bleed with 'jelly type clots' that seem to relieve the pressure a little.
My sister has asked me to ask if there is anyone else out there who is going through the same thing? Tried and tested treatments? And what to do to ease the restless legs as she has lots of engery to use but most of the time the pain in her head is too much to bear moving and she has to stay flat. Can you help?
Thanks so much for any help & advice.
Best regards,
Louise - CH
The professor diagnosed her with: C.S.F. Leak, Tonsillar Herniation, Chiari I malformation, begin intercranale hypertension. I would like to understand exactly what these terms mean.
They cannot find the leak and have tried her on Caffine drip, numerous scans to try and locate the leak, and various medication. We are now waiting to hear from the doctor who is treating her what is the next medication she will try. I know blood patches have worked for some people but understand this is a last resort?
My sister struggles with a restless leg type syndrome as she only gets respite when lying flat - she suffers with extreme headaches which no painkillers seem to touch. She has a clear fluid that leaks from her ear / nose. SOmetimes the pain gets incredily bad and she has a nose bleed with 'jelly type clots' that seem to relieve the pressure a little.
My sister has asked me to ask if there is anyone else out there who is going through the same thing? Tried and tested treatments? And what to do to ease the restless legs as she has lots of engery to use but most of the time the pain in her head is too much to bear moving and she has to stay flat. Can you help?
Thanks so much for any help & advice.
Best regards,
Louise - CH
I had sinus surgery in feb 2007. Doctor discovered CsF leak.
Was in the hospital for 6 days with lumbar drain.
CSF leak stopped. Since then my legs feesl week & restless, especially when I am sitting. Cannot pint point what the problem is.
amin
Was in the hospital for 6 days with lumbar drain.
CSF leak stopped. Since then my legs feesl week & restless, especially when I am sitting. Cannot pint point what the problem is.
amin
Thank you both very much indeed for your help. I know my sister (Fiona) gets some comfort from hearing about other people with similar symptoms; I guess knowing she is not alone.
Fiona has not had any surgery yet as they cannot find the leak - I'm not sure whether to ask my mom to push for blood patches to try and resolve?
I will look up additional info on the links you provided, but I think you're right, it really is hard to find a good Neurosurgeon that really knows what to do. It took a couple of years for her to be diagnosed and now they seem at a loss for the next steps.
Best regards,
Louise
Fiona has not had any surgery yet as they cannot find the leak - I'm not sure whether to ask my mom to push for blood patches to try and resolve?
I will look up additional info on the links you provided, but I think you're right, it really is hard to find a good Neurosurgeon that really knows what to do. It took a couple of years for her to be diagnosed and now they seem at a loss for the next steps.
Best regards,
Louise
i forgot to add i read somewhere that csf can sometimes but rarely leak into the sinus's (usualy the result of trama) which after a short period of time causes meningitis
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