'We all know that getting on the Internet isn't the best way to find a diagnosis'.....do we?. It was the Internet that educated me about the existence of a CSF leak and hence be able to push for the diagnosis in the emergency room. Apparently 0% of leakers are diagnosed in the emergency room so I was extremely lucky. After getting an MRI that was 'impressive' for showing SIH I got patched a few days later. If it wasn't for the Internet and videos like this I could still be stuck on my back undiagnosed and suffering. Thank you for the work you do, its extremely valuable.
@@darrend2035 Excruciating and debilitating head pain any time my head was upright. I had to be lying flat without a pillow, or crouched on all fours keeping my head in line with my hips 24/7 with no breaks. Washing was impossible as was eating as I couldn't reach the fridge. I could only mobilise by being completely bent over having my head no higher than my hips so couldn't see or do anything. Lifting my head even an inch would bring on the pain. Horrible cramping neck pain and pain in-between my shoulder blades, my head felt like it was stuffed with newspaper and my hearing in my right ear had a weird metallic echo and also joint, muscle aches and my skin got a strange slighty mottled appearance for some reason. It was the horrific head pain that was the worst, pushing down on the back of my head and throbbing temples. The most excruciating 10 out of 10 pain you can imagine. I stayed like that 24/7 for over three weeks until I recieved an epidural blood patch. I had a fast leak so my symptoms were severe and came on fast. Other people can have a slower leak where the symptoms come on slower and aren't as severe.
@@Serenity7250 wow , hmm maybe I don’t have a leak then My headaches are sorta positional and most of the pain is only in the back lower head upper neck . If I lay down flat it does feel a bit better The only thing is , if I touch the back of head or gently push on the back of head it flares up the headache I’m leaning more towards Occipital Neurgia just don’t want to mask the pain if there’s really a issue you know . My brain MRI was fine The Spine was ok , they found a small cyst and some slight enlightened area (abnormal)on the T6-T7 area so idk .
@@darrend2035 Try keeping a symptom diary and try to identify any triggers. The biggest thing with a leak is the positional headache which happens due to gravity's effect on a brain that's not supported in cerebrospinal fluid. My symptoms were severe because I guess I had a fast leak. You could see if you could get a second opinion about your MRIs from a csf leak specialist as local Dr's don't tend to be trained in it. The thing about touching the back of your head bringing on a flare could be because it's the nerves that are the issue which I think is the case in occipital neuralgia. Hope you figure it out soon.
Thanks for responding it means a lot Im not sure if I have a leak Yes my headaches do feel better laying down but sometimes they get worse What I mean is the back of my head gets very sensitive When I lay my head down it will trigger a migraine??? Like the back of my head is tender and sensitive and it will trigger this migraine I will have to lay down but only on my side. If I stay down I’m usually ok , but soon as I go out and about the headache will come and back of my neck and trap muscle begin to get very tense and tight. Also get waves of dizziness, my ears ring but I’ve had that for years , Anyway I’ve had MRI done I know tut not a doctor but what’s your opinion, thank you 🙏
I've suffered 3 CSF leaks between ages 24 & 42. The 1st was from a lumbar punture, which was the only reason I knew what was going on when the 2nd & 3rd leaks happened, spontaneously. I also suffer from migraines & I can say that the headaches & symptoms from a CSF leak are unlike anything else. Despite this fact, it's still extremely difficult to convince ER doctors to take you seriously. However, this video is very informative & taught me some things about how to advocate for myself, if another leak happens again, in the future. The only thing I'd add to it is an explanation about why blood patches are used & why they work (there's no blood flow to the dura that could bring the materials needed to repair a tear, so injecting our own blood into the space around the dura creates a clot that temporarily stops the leak until the collagen in the blood can repair the torn tissue). I also intensely dislike how often the interviewer interrupts the guest speaker. Waiting until he's in the middle of describing how one of his patient's was cured to ask him to explain what he does as a neuroradiologist is completely confusing, inappropriate, and rude.
Thank you for this informative synopsis of the CSF SIH journey! Thank you to UC Anschutz and Dr. Callen for bringing to light and expertly treating this debilitating disease.
Thx. I have multiple types of CSF leaks in my thoracic spine (a few cysts and a CSF venous fistula) since 2015 (not resolved to date and most likely forever). A year and a half to obtain the SIH diagnosis since onset and many years later to get imaging proofs.
Years ago, I had a dentist appt induced leak. Had strange hearing problems. Hearing test normal but I'd get sudden hearing loss lasted more than a year. A couple years later my chiropractor adjusted my neck and after that immediate hearing loss. Got home and had a severe vomiting headache. Had 3 ER visits , mri s and leak un diagnosed and said to be unclassified migraine. I went to the ER with severe postural headache but still a leak un diagnosed. I still have chronic spinal pain. My hospital is an academic center and I don't think they were even aware of csf leak headaches. The chiropractor adjustment of my neck must've punctured the dura in my C spine.
@@pauljames5914 Pftt that's annoying! I'd definitely get a second opinion - stay strong I'm in a similar boat think I've been leaking for 1.5 years done every migraine medication possible, going to speak to Doc about a potential CSF leak
This is great information. My story is 10 months now and an ongoing saga. I just had C7, C6, and C5 fused and in a cage. I have fluid in a sack off to the left of C1 and C2. My pain nocks the air out of me at times with every step I take. It only lessons when I am flat on my back. This is no way to live!!!!!!!!!!!!!!!!!!!!! I have a home business. I called my doctor, He know the fluid is there. Every Radiologist 3 MRI'S 2 1 CT Myelography then put in an upside-down position. Everyone could see the fluid. What I find to be making !!!!!!!!!!!!!!!!??????????????? Medical staff were upset that I was in pain. Every Radiologist report said THIS IS GOT TO BE VERY PAINFUL. HERE I AM 10 MONTHS LATER. WHAT IS WRONG WITH HUMANITY.!!!!!!!!!!!!!!!!!!!!!!!!!!???????????????????????????????????????????
I have a pretty nice csf leak. Pro tip....don't ever call a rhinologist in washington state. They will never answer you. Just go to the er and force them to do their job. Edit: it's so easy to identify one. Blistering headaches on the base of the skull. Leaking clear fluid ( a lot) from one nostril. It's like a faucet. The rag you use for it isn't even discolored. Or stiff. Looks like new. Even though you're dripping on it all day. I called 3 rhinologists in washington. Have great insurance. None answered or called back.
There’s an overlap between POTS and CFS symptoms. Many challenges finding neurologists who are familiar with CFS symptoms annd and able to diagnose annd treat. Offered normal MRI of brain & neck which isn’t enough….
They tried to do a lumbar puncture on my dad thinking it was meningitis and they were only able to get about 5 drops of CSF because his CSF pressure was so low. MRI of head and neck was fine so now they're ready to send him home without investigating further. I'm so discouraged. He's been going through this for over 3 weeks now.
Great video! But just a little constructive criticism, it's very distracting and sorry but pretty annoying with all the interruptions. Examples... responding with yes, uh huh, etc.. often when the doctor was explaining things and interrupting him every time he mentioned venous fistulas to explain again what that is. A great interviewer will nod instead of interjecting a word of agreement or understanding. Again this was a great interview and I really appreciated all the great info.
I need help i really think I have a cfs leak and my neurosurgeon has totally dismissed me and has lost my results so I went to my gp who took a nose swab it came back negative but mynose is still leaking fluid
Thank you this gives me hope my neurologist gave up she said she tried all the meds and no reliefs so she couldn’t help me I ask about a leak she said she doesn’t do that thank Gir I found your channel PS aim seeing a new Dr
I wish u guys lived close to me cause I had a csf leak and it was fixed. The hole was in my forehead. But I have had a pressure headaches everyday since 2010. It gets so bad that I would pass out
I have multiple thoracic nerve root sleeve diverticula largest at T-8-9 T-10-11 ( where they found a leak) T-12 T-1. It’s been 50 days I’ve been on my back. I’ve had 3 blood patches that have failed. I’m so depressed and I feel hopeless I went to ER yesterday and they basically told me there is Nothing wrong with me did not treat me did Nothing!
After 4 myelography sessionswith fast CT, conical CT, no spinal leak found, but....cranial leak? I've got a Bern Score of 5... within 1 hour standing, can hardly walk, can barely think... but, who can diagnose this, now? Inselspital in Bern, maybe, but will insurance pay?
I've been to the best in Germany, one that's known worldwide, and I'm still spending 80% of my day lying on my left side... The other 20%, fighting brutal headaches and debilitating cognitive effects... But, thanks for caring enough to reply! (When none of the experts out there will..) [ BTW, possibility that an overzealous nurse punctured my sinus doing MRSA or COVID tests, perhaps because of my "unusual" turbinates]
'We all know that getting on the Internet isn't the best way to find a diagnosis'.....do we?. It was the Internet that educated me about the existence of a CSF leak and hence be able to push for the diagnosis in the emergency room. Apparently 0% of leakers are diagnosed in the emergency room so I was extremely lucky. After getting an MRI that was 'impressive' for showing SIH I got patched a few days later. If it wasn't for the Internet and videos like this I could still be stuck on my back undiagnosed and suffering. Thank you for the work you do, its extremely valuable.
What was your symptoms?
@@darrend2035 Excruciating and debilitating head pain any time my head was upright. I had to be lying flat without a pillow, or crouched on all fours keeping my head in line with my hips 24/7 with no breaks. Washing was impossible as was eating as I couldn't reach the fridge. I could only mobilise by being completely bent over having my head no higher than my hips so couldn't see or do anything. Lifting my head even an inch would bring on the pain. Horrible cramping neck pain and pain in-between my shoulder blades, my head felt like it was stuffed with newspaper and my hearing in my right ear had a weird metallic echo and also joint, muscle aches and my skin got a strange slighty mottled appearance for some reason. It was the horrific head pain that was the worst, pushing down on the back of my head and throbbing temples. The most excruciating 10 out of 10 pain you can imagine. I stayed like that 24/7 for over three weeks until I recieved an epidural blood patch. I had a fast leak so my symptoms were severe and came on fast. Other people can have a slower leak where the symptoms come on slower and aren't as severe.
@@Serenity7250 wow , hmm maybe I don’t have a leak then
My headaches are sorta positional and most of the pain is only in the back lower head upper neck .
If I lay down flat it does feel a bit better
The only thing is , if I touch the back of head or gently push on the back of head it flares up the headache
I’m leaning more towards Occipital Neurgia just don’t want to mask the pain if there’s really a issue you know .
My brain MRI was fine
The Spine was ok , they found a small cyst and some slight enlightened area (abnormal)on the T6-T7 area so idk .
@@darrend2035 Try keeping a symptom diary and try to identify any triggers. The biggest thing with a leak is the positional headache which happens due to gravity's effect on a brain that's not supported in cerebrospinal fluid. My symptoms were severe because I guess I had a fast leak. You could see if you could get a second opinion about your MRIs from a csf leak specialist as local Dr's don't tend to be trained in it. The thing about touching the back of your head bringing on a flare could be because it's the nerves that are the issue which I think is the case in occipital neuralgia. Hope you figure it out soon.
Thanks for responding it means a lot
Im not sure if I have a leak
Yes my headaches do feel better laying down but sometimes they get worse
What I mean is the back of my head gets very sensitive
When I lay my head down it will trigger a migraine??? Like the back of my head is tender and sensitive and it will trigger this migraine
I will have to lay down but only on my side.
If I stay down I’m usually ok , but soon as I go out and about the headache will come and back of my neck and trap muscle begin to get very tense and tight.
Also get waves of dizziness, my ears ring but I’ve had that for years ,
Anyway I’ve had MRI done
I know tut not a doctor but what’s your opinion, thank you 🙏
Thank you to those wonderful people who devote their time to help those suffering daily torture of a CSF Leak!
I've suffered 3 CSF leaks between ages 24 & 42. The 1st was from a lumbar punture, which was the only reason I knew what was going on when the 2nd & 3rd leaks happened, spontaneously. I also suffer from migraines & I can say that the headaches & symptoms from a CSF leak are unlike anything else. Despite this fact, it's still extremely difficult to convince ER doctors to take you seriously. However, this video is very informative & taught me some things about how to advocate for myself, if another leak happens again, in the future.
The only thing I'd add to it is an explanation about why blood patches are used & why they work (there's no blood flow to the dura that could bring the materials needed to repair a tear, so injecting our own blood into the space around the dura creates a clot that temporarily stops the leak until the collagen in the blood can repair the torn tissue).
I also intensely dislike how often the interviewer interrupts the guest speaker. Waiting until he's in the middle of describing how one of his patient's was cured to ask him to explain what he does as a neuroradiologist is completely confusing, inappropriate, and rude.
Thanks for doing this Lindsay and Dr Callen!
Thank you for this informative synopsis of the CSF SIH journey! Thank you to UC Anschutz and Dr. Callen for bringing to light and expertly treating this debilitating disease.
Dr. Callen, you are an amazing doctor!
Amazing work
Thx. I have multiple types of CSF leaks in my thoracic spine (a few cysts and a CSF venous fistula) since 2015 (not resolved to date and most likely forever). A year and a half to obtain the SIH diagnosis since onset and many years later to get imaging proofs.
Absolutely fantastic 👏🏼 Well done all involved!
Years ago, I had a dentist appt induced leak. Had strange hearing problems. Hearing test normal but I'd get sudden hearing loss lasted more than a year. A couple years later my chiropractor adjusted my neck and after that immediate hearing loss. Got home and had a severe vomiting headache. Had 3 ER visits , mri s and leak un diagnosed and said to be unclassified migraine. I went to the ER with severe postural headache but still a leak un diagnosed. I still have chronic spinal pain. My hospital is an academic center and I don't think they were even aware of csf leak headaches. The chiropractor adjustment of my neck must've punctured the dura in my C spine.
Did you get a diagnosis in the end?
@@FredBanks20 no, they just said migraine
@@pauljames5914 Pftt that's annoying! I'd definitely get a second opinion - stay strong I'm in a similar boat think I've been leaking for 1.5 years done every migraine medication possible, going to speak to Doc about a potential CSF leak
@@FredBanks20 trouble is most doctors don't even know much about them.
This is great information. My story is 10 months now and an ongoing saga. I just had C7, C6, and C5 fused and in a cage. I have fluid in a sack off to the left of C1 and C2. My pain nocks the air out of me at times with every step I take. It only lessons when I am flat on my back. This is no way to live!!!!!!!!!!!!!!!!!!!!! I have a home business. I called my doctor, He know the fluid is there. Every Radiologist 3 MRI'S 2 1 CT Myelography then put in an upside-down position. Everyone could see the fluid. What I find to be making !!!!!!!!!!!!!!!!??????????????? Medical staff were upset that I was in pain. Every Radiologist report said THIS IS GOT TO BE VERY PAINFUL. HERE I AM 10 MONTHS LATER. WHAT IS WRONG WITH HUMANITY.!!!!!!!!!!!!!!!!!!!!!!!!!!???????????????????????????????????????????
I have a pretty nice csf leak. Pro tip....don't ever call a rhinologist in washington state. They will never answer you. Just go to the er and force them to do their job.
Edit: it's so easy to identify one. Blistering headaches on the base of the skull. Leaking clear fluid ( a lot) from one nostril. It's like a faucet. The rag you use for it isn't even discolored. Or stiff. Looks like new. Even though you're dripping on it all day.
I called 3 rhinologists in washington. Have great insurance. None answered or called back.
There’s an overlap between POTS and CFS symptoms. Many challenges finding neurologists who are familiar with CFS symptoms annd and able to diagnose annd treat. Offered normal MRI of brain & neck which isn’t enough….
They tried to do a lumbar puncture on my dad thinking it was meningitis and they were only able to get about 5 drops of CSF because his CSF pressure was so low. MRI of head and neck was fine so now they're ready to send him home without investigating further. I'm so discouraged. He's been going through this for over 3 weeks now.
Great video! But just a little constructive criticism, it's very distracting and sorry but pretty annoying with all the interruptions. Examples... responding with yes, uh huh, etc.. often when the doctor was explaining things and interrupting him every time he mentioned venous fistulas to explain again what that is. A great interviewer will nod instead of interjecting a word of agreement or understanding. Again this was a great interview and I really appreciated all the great info.
Agree. “Right, mmm, right, etc.” not necessary.
Agreed! I had the same feedback about the interruptions.
I need help i really think I have a cfs leak and my neurosurgeon has totally dismissed me and has lost my results so I went to my gp who took a nose swab it came back negative but mynose is still leaking fluid
Do your research and advocate for yourself. A lot of doctors are going to be dismissive, but keep pushing for healing. Hope you're doing well.
@@MamaMilkBubblesa nose swab will not diagnose. You need a beta 2 transferrin test. Very expensive. Hard to get drs to do
Thank you this gives me hope my neurologist gave up she said she tried all the meds and no reliefs so she couldn’t help me I ask about a leak she said she doesn’t do that thank Gir I found your channel PS aim seeing a new Dr
I wish u guys lived close to me cause I had a csf leak and it was fixed. The hole was in my forehead. But I have had a pressure headaches everyday since 2010. It gets so bad that I would pass out
I have multiple thoracic nerve root sleeve diverticula largest at T-8-9 T-10-11 ( where they found a leak) T-12 T-1. It’s been 50 days I’ve been on my back. I’ve had 3 blood patches that have failed. I’m so depressed and I feel hopeless I went to ER yesterday and they basically told me there is Nothing wrong with me did not treat me did Nothing!
husband has been. suffering. since. 3/2/07... how do you get films to this doctor?
After 4 myelography sessionswith fast CT, conical CT, no spinal leak found, but....cranial leak?
I've got a Bern Score of 5... within 1 hour standing, can hardly walk, can barely think... but, who can diagnose this, now? Inselspital in Bern, maybe, but will insurance pay?
Don’t give up hope keep fighting. CFL is hard to find research to find a Dr that specializes in CFL.
I've been to the best in Germany, one that's known worldwide, and I'm still spending 80% of my day lying on my left side... The other 20%, fighting brutal headaches and debilitating cognitive effects...
But, thanks for caring enough to reply! (When none of the experts out there will..)
[ BTW, possibility that an overzealous nurse punctured my sinus doing MRSA or COVID tests, perhaps because of my "unusual" turbinates]