CSF leak is a horrific condition that comes out of nowhere and takes your life away until you're able to get the tear fixed. Dr's are not trained in the condition so it's up to you to figure out. They need to change the wording as its horrendous HEAD PAIN, NOT a 'headache'. Extremely disabling. More support is needed for sufferers.
This is great info, but Mayo Rochester declined my referral due to lack of appointment slots, to try and figure out why my "migraine" has some symptoms that don't fit migraine and for which all migraine therapies tried have failed. So, again, great info to know, but in the end, of no value to me--I get to remain in daily hell with no help in sight. This is a shame as Mayo's campus is close by where I live and I'd have to travel several days to get to Stanford, Duke, or UT Southwestern. I share a lot of the symptoms the woman in the video had, though, so I can relate.
I have a large tarlov cyst @ S2, It is suspected that my CSF puts pressure on my cyst when upright causing it to expand and reducing the amount of fluid around my brain to lessen. I don't have a CSF leak. My Neurosurgeon says this is the first time he has seen anything like this.
I was told that I had chiari malformation and needed decompression surgery. I had the surgery and it fixed absolutely nothing. In fact, I think it made everything worse. Now I’m told that I have low pressure of the brain. I’m dizzy, often with lower back pain. Pressure or congestion in my head. Muscle fatigue and weakness. Headaches often brought on by laughter. Insomnia. Sometimes woken up by vertigo. I’ve had a blood patch. It helped for a week. Does anyone feel like I do? Looking for help.
I have csf leak by my nose and mouth some oil type liquid comes from past 2 years when I get up I get faint I feel my ears sound quality decreased even my brain x ray shows some liquid passing all over and cause maxillary sinustis but here in India doctors are so rude they not listen your talk and suggest medicine and what my life is hell now I lose intrest in everything day by day and going to s*ci*e soon....
Can you fully recover from this? Will deal with symptoms forever? The reason i think i may have this is because if i get up i feel like 8m going to faint.
CSF leak is a horrific condition that comes out of nowhere and takes your life away until you're able to get the tear fixed. Dr's are not trained in the condition so it's up to you to figure out. They need to change the wording as its horrendous HEAD PAIN, NOT a 'headache'. Extremely disabling. More support is needed for sufferers.
I am going through this now. I’m unable to stand or sit up
This is great info, but Mayo Rochester declined my referral due to lack of appointment slots, to try and figure out why my "migraine" has some symptoms that don't fit migraine and for which all migraine therapies tried have failed. So, again, great info to know, but in the end, of no value to me--I get to remain in daily hell with no help in sight. This is a shame as Mayo's campus is close by where I live and I'd have to travel several days to get to Stanford, Duke, or UT Southwestern. I share a lot of the symptoms the woman in the video had, though, so I can relate.
Do you have pain but not in the head for me upper body
Thanks for sharing! Very helpful.
I have a large tarlov cyst @ S2, It is suspected that my CSF puts pressure on my cyst when upright causing it to expand and reducing the amount of fluid around my brain to lessen. I don't have a CSF leak. My Neurosurgeon says this is the first time he has seen anything like this.
Hope things have gotten better for you Wayne.
I was told that I had chiari malformation and needed decompression surgery. I had the surgery and it fixed absolutely nothing. In fact, I think it made everything worse. Now I’m told that I have low pressure of the brain. I’m dizzy, often with lower back pain. Pressure or congestion in my head. Muscle fatigue and weakness. Headaches often brought on by laughter. Insomnia. Sometimes woken up by vertigo. I’ve had a blood patch. It helped for a week. Does anyone feel like I do? Looking for help.
I have csf leak by my nose and mouth some oil type liquid comes from past 2 years when I get up I get faint I feel my ears sound quality decreased even my brain x ray shows some liquid passing all over and cause maxillary sinustis but here in India doctors are so rude they not listen your talk and suggest medicine and what my life is hell now I lose intrest in everything day by day and going to s*ci*e soon....
IF inHawaiiget out! 2 mds assaulted me refusing to take action with appropriate testing castle hosp Queens what is Pacific health.
Can you fully recover from this? Will deal with symptoms forever? The reason i think i may have this is because if i get up i feel like 8m going to faint.
Could be pots
Xoxo !tough few most don’t listen 2027-24 still battling dr.s misdiagnosis, cruelty
@@Rapunzel808 does it cause pain in the body without headache I have heds which can be comorbid
Did your ears end up getting better with the sound sensivity?