I’ve lurked here since the beginning, but don’t post much. Have always been impressed with some of the health and wellness knowledge provided on the General forum. Decided I would throw this out there while I wait for further information on my potential condition. Curious if there’s any first hand experience with cerebrospinal fluid leaks and/or maybe even a neurologist in the house?
I’ll try to keep my situation short, but here’s a quick synopsis. Have suffered from some highly unusual, but very persistent, headaches for 5-6 months. Cut out everything I could think of one step at a time before seeking medical advice. Started with nicotine/alcohol, caffeine, onto sugars, and lost ~15lbs in the last six weeks when I really focused on the diet. Nothing helped whatsoever. Headaches persisted, depression/anxiety were at all time highs, and by November I started to experience some quick bursts of vertigo/dizziness. My mother and her sister both passed in their mid 40’s from brain tumors (I’m 37). So I was convinced that was my fate as well!
My wife and I were scheduled for a two week vacation in Mexico with some of her family over the holidays. I talked to my doc at home finally and he agreed getting some imaging done down here would be a great idea. (We live on an island in Alaska and getting an MRI done means flying somewhere anyway). So the first day down here I had head and lumbar pics taken for about $600usd cash. Two days later we lined up an hour consultation with a neurosurgeon, for $50usd, lol! He talked my wife and I through nearly every image and we learned a ton. No tumors or other abnormalities, until he claimed to be able to see with “90% certainty” I had about 1/3 of what he would consider normal CSF in my brain. Referencing the lumbar pics he also claimed to be able to see where fluid was leaking. He ordered more head pics with contrast and a myelogram (spinal CT with contrast) to verify leaks and then started talking about procedures. We pumped the brakes and decided we aren’t real excited about needles in my spine down here. I trust the neurosurgeon as he seemed incredibly knowledgeable and genuine, but the folks in the imagining department not so much. Anyway, plan is to head home with this information and get the ball rolling in the states. Reading some experiences and intel on different hospitals/docs in the states though, it seems this can be a very complicated/drawn out battle for many with inconsistent treatment results.
So while I have another week to marinate on this in Mexico, and who knows how long before we can get some further details in the U.S., I figured I’d toss it out here to see if there was any first hand experience with a CSF leak condition? Wondering how it might affect an active lifestyle with a lot of heavy lifting, from heavy packs in the mountains to hard manual labor (I commercial fish for a living). Also any doctor/facility experience would be welcomed.
I’ll try to keep my situation short, but here’s a quick synopsis. Have suffered from some highly unusual, but very persistent, headaches for 5-6 months. Cut out everything I could think of one step at a time before seeking medical advice. Started with nicotine/alcohol, caffeine, onto sugars, and lost ~15lbs in the last six weeks when I really focused on the diet. Nothing helped whatsoever. Headaches persisted, depression/anxiety were at all time highs, and by November I started to experience some quick bursts of vertigo/dizziness. My mother and her sister both passed in their mid 40’s from brain tumors (I’m 37). So I was convinced that was my fate as well!
My wife and I were scheduled for a two week vacation in Mexico with some of her family over the holidays. I talked to my doc at home finally and he agreed getting some imaging done down here would be a great idea. (We live on an island in Alaska and getting an MRI done means flying somewhere anyway). So the first day down here I had head and lumbar pics taken for about $600usd cash. Two days later we lined up an hour consultation with a neurosurgeon, for $50usd, lol! He talked my wife and I through nearly every image and we learned a ton. No tumors or other abnormalities, until he claimed to be able to see with “90% certainty” I had about 1/3 of what he would consider normal CSF in my brain. Referencing the lumbar pics he also claimed to be able to see where fluid was leaking. He ordered more head pics with contrast and a myelogram (spinal CT with contrast) to verify leaks and then started talking about procedures. We pumped the brakes and decided we aren’t real excited about needles in my spine down here. I trust the neurosurgeon as he seemed incredibly knowledgeable and genuine, but the folks in the imagining department not so much. Anyway, plan is to head home with this information and get the ball rolling in the states. Reading some experiences and intel on different hospitals/docs in the states though, it seems this can be a very complicated/drawn out battle for many with inconsistent treatment results.
So while I have another week to marinate on this in Mexico, and who knows how long before we can get some further details in the U.S., I figured I’d toss it out here to see if there was any first hand experience with a CSF leak condition? Wondering how it might affect an active lifestyle with a lot of heavy lifting, from heavy packs in the mountains to hard manual labor (I commercial fish for a living). Also any doctor/facility experience would be welcomed.
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