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General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below. |
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10-20-2008, 12:00 AM | #1 | ||
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New Member
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Hello everyone, I have a csf leak that was caused from a fall on ice about 7 years ago. Last year I had a blood patch done at the Mayo clinic in Rochester Minn. This year around May I had another one done in my home town. Both have failed and I just started getting the headaches back. Looks like im scheduled for another in a week. Oh Yeah! alot of pain. Im very frustrated and am beginning to feel theres no end to this can anyone give some suggestions or informaton that might be helpful. Thanks to everyone
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10-20-2008, 05:25 AM | #2 | |||
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Wisest Elder Ever
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Hello and welcome to NeuroTalk!
I'm so sorry for all the pain and frustration you're experiencing. I'm sure someone with more experience with this condition than I will be along shortly to offer some suggestions. In the meantime....I just wanted to welcome you to the site!!
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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10-20-2008, 03:40 PM | #3 | |||
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Time to look for a neurosurgeon that will put in a permanent patch.
Try looking at surgeons that do a lot of pituitary surgeries (CSFs leaks happen at times with those surgeries) and they may take you on with more than a blood patch. Large universities usually have pituitary centers - look for a very very experienced surgeon, preferably using an endocopic technique so they can see more. In the mean time, are you laying as flat as possible and using caffeine to help? Good luck.
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Cyclical Pituitary Cushing's, Addison's via bilateral adrenalectomy, Growth Hormone Deficent, Migraines, Trigeminal Neuralgia, Hashimoto's, Hypothyroid, Myasthenia Gravis? |
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12-04-2008, 01:16 PM | #4 | ||
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New Member
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Hi,
I had a spontaneous csf leak, I had a blind blood patch and then two caffeine infusions, and then followed up with a myleograph to ensure it worked. I suggest you ask for a myleograph as they will be able to see whether you have any further leakages. It's been 6 months and i dont have any headaches. |
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12-22-2008, 01:36 AM | #5 | |||
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Member
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Marks, how are things now?
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"You can't have living without dying. So you can't call it living, what we got. We just ARE, we just BE, like rocks beside the road." -Tuck . |
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12-22-2008, 06:43 PM | #6 | ||
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New Member
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Quote:
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01-16-2009, 06:33 AM | #7 | ||
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Junior Member
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the blood patches don't work?
I'm quite interested in someone explaining the use of caffene to help stop the headaches. (i'm completely new to the game) I'm due for another LP next week and a bit worried about the headaches as the first and last one i went in for was 5 unsuccessful LP's which must have leaked as I was flat on my back for 6 - 7 days and still not completely better yet but enough to walk around and finally take care of myself! I hope you find a solution that works for you mark! |
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01-20-2009, 08:07 AM | #8 | |||
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Member
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http://www.neurologyreviews.com/jan02/fluid.html
Many treatments are employed for cerebrospinal fluid leak headaches, Dr. Mokri noted. The use of caffeine “has been somewhat effective in some of the patients, while analgesics and nonsteroidals are used by others. Corticosteroids have also been used, but the claims of effectiveness have been mostly anecdotal. Furthermore, some of the patients make spontaneous recovery after variable periods of time.” http://uimc.discoveryhospital.com/main.php?t=enc&id=584 CSF leak following a lumbar puncture can be treated with caffeine, and hydration. A blood patch may be placed at the site of the spinal tap. This is a procedure where the individual's own blood is injected at the location of the spinal tap, sealing the hole so as to prevent the leak. http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0 A 69 year old man presented with headache on arising and relieved with recumbency. His clinical presentation, laboratory data, response to treatment and radiographic evaluation were consistent with spontaneous low cerebrospinal fluid pressure from CSF hyperabsorption. Cisternography showed rapid accumulation in the kidneys and urinary bladder, without evidence of CSF leak. His headache was eventually controlled with two blood patches and oral caffeine. It was something I know my friends did and I know my doc said if I got a bad headache after surgery to lay flat and drink coffee - it does not work for everyone, but it seemed to help a bit.
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Cyclical Pituitary Cushing's, Addison's via bilateral adrenalectomy, Growth Hormone Deficent, Migraines, Trigeminal Neuralgia, Hashimoto's, Hypothyroid, Myasthenia Gravis? |
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