The Mystery Headache: CSF Leak - A Fixable Cause of Daily Headache - 2023 Update

[@dylansanchez7733]

I had a TBI 4 years ago that sent me into a coma, I got told I would fully recover but every day of life is torture and I can relate to every single thing that is said about CSF leaks. I’ve decided to finally go see a doctor about this but I honestly feel like they won’t care or look into it.

[@D37fit]

Any update?

[@thenusa]

Thank you for the care and clarity. As a post-op CSF leak patient with lingering symptoms, having navigated the obstruse path to CSF treatments, and having just had a first blood patch, am appreciating this. It is helpful to have this larger view and discernments of different nuanced types and process, along with related research insights from a broader researcher’s vantage. The slides were helpfully understandable, as I try to make sense of what may be happening inside me in relation to what is known, and my phenomenological experience. Finally, I find some comfort in Dr. Ian Carroll’s kindness and humility in search of solutions.

[@beachgal2023]

I am 23 months into this and 6 doctors later, no relief. IT SUCKS. I'M CALLING YOU ON MONDAY

[@jakewalker271]

Dr Wouter I. Schievink saved my life. From beyond daily misery to survivable. I was hopeless with a massive CSF leak as a result of a negligent brain surgeon, he gave me a good portion of my life back.

[@mateoenkc]

Oh wow. I have all these symptoms and I have for about ten years! 9:44 I had an epidural steroid injection which caused catastrophic DVTs and PEs. I was diagnosed with antiphospholioid antibody syndrome, then chronic migraines, chronic fatigue, fibromyalgia, constant nausea, total inability to think...i went from extremely bright and quick to constantly confused and dumb.

[@mateoenkc]

And circadian rhythm disorder 15:00

[@AmandaHolt-r9r]

Thank you so much for caring Dr. Carroll!!

[@agustaharting21]

How I wish he would mention age! I am 86 and developed CSF leak symptoms 18 months ago Have been in agony every single day. Just get bounced between doctors in Indianapolis who are clueless, or disinterested because of my age. Living with these symptoms is hell on earth, and I don’t have much hope that I will get help . I’m like the proverbial “poster child” of the symptoms he describes here. Does ANYONE here know if they do blood patches on old people? I also would love to know if anyone treats this in Indiana, or in nearby states.

[@chantelDavidson]

Absolutely they do

[@debbiedresser7646]

How do I find some help with Spinal Fluid Leak? Dr Carroll pleads to find us. HOW DO WE GET THE HELP WE DESPERATELY NEED?

[@claire5399]

I have a spinal leak from my nose, as well seen in a MRI along w several Tarlov Cysts. I also have hEDS. Question. A where do I find help in The East Bay Area? Can contrast in MRIs and nuclear pass the blood brain barrier , veins etc and get into the spinal and brain barrier?

[@tinaangelsweitzer3245]

I have CF in brain and they have gone in multiple times to release fluid it start is 38 and they pull 20 I'm good for 3 days and all systems return why do they not find a solution or what can I do to stop suffering?

[@KristinaMarie463]

How do I find a physician to treat you for a possible CSF. I had a known CSF in 2010 and had a blood patch and another CSF in 2018 immediately after having my second lumbar spine surgery that warranted a second emergency surgery the next day to close a large leak. Since have been experiencing all the classic symptoms that a CSF can cause since 2017-2018 that I believe started sometime after my cervical spine surgery or the lumbar surgery. I have had three lumbar spine surgeries and the one cervical and honestly since 2018 I began having the headaches first than the other symptoms started causing doctors in all other specialties diagnosing each symptom separately but no one expects a CSF I don’t know how to explain to my doctors to where I am taken seriously. I even have spinal fluid sitting in my lumbar region since 2018 but that hasn’t warranted any concerns from my doctor.

[@lohikarhu734]

it's sad that these videos don't seem to have any follow-up by presenters, or organisers, in terms of any kind of referrals to help for some of the awful cases that people report... even some means of suggestions that sufferers might pass on to their GP or Neuro specialists? Sadly, also, too many neurological specialists, even hospital neurology clinics, are years behind in knowledge regarding SIH / CSF leak... in my local neurological specialist hospital, they kicked me out of treatment when i refused a lumbar puncture to measure pressure, even though it's well-documented that spinal CSF pressure is not correlated to SIH! btw, i will be having my third visit with a respected SIH center(Universität F..g), who have, as yet, not been able to find my 'leak', which seems to be C1, or sinus, based on observation that lying on left side helps, and that even watching a video, in bed, causes early symptoms. so, third blood patch coming, and maybe, a visit to Bern.

[@kpgc1234]

Could you share a link to this lecture with your doctors?

[@miranee9142]

How to help with csf leak

[@me0322]

Are you suffering from one?

[@mv8908]

Did you ever find a good doctor

[@dana102083]

The answer will be dictated by where you live in the world. Epidural Blood patches are the answer.

[@mv8908]

@@dana102083 even inside the Skull?

[@CarbonTaxLOL]

I think they may have also figured out how to use glue to fix them? drive.google.com/drive/folders/1uE8MXke3zmQXLudirQVdzC6ElFCX2OOJ?usp=drive_link @@dana102083

[@michie43able]

PCCT more sensitive in picking up CVF's

[@abigaild7304]

Dr Carroll is the most unprofessional person I have ever encountered. He was unprepared about my case and lacked knowledge that many other anesthesiologists I've encountered had. He put false information in my notes and I had to go through medical records to get it corrected as he was trying to hide from me like the coward he is. He will try to put you under against his will even if you can't have general anesthesiology. He also punctures a lot of people during patches and says it's their fault. He shares people's private health info without their consent with other doctors internationally. Stanford is aware he is an incompetent and harmful egomaniac and lets him keep going. Stay far far away

[@doodleluvr1441]

You are entitled to your opinion. I had the opposite experience. Dr. Carroll saved my life.

[@hanieletsantos3687]

@@doodleluvr1441may i know how did you contact dr. Carroll?

[@BettyWinfred]

Clark Kimberly Rodriguez Charles Garcia Lisa

[@BettyWinfred]

Moore Barbara Brown Jennifer Martinez Mark

[@LindsayIna-r2t]

Harris Larry Clark Mark Lewis Frank

[@HansomEden-o1g]

Robinson Laura Jackson Kevin Hall Michael

[@kengray1291]

I saw Dr Ian Carrol & Had 8 MRI 2/14/20 at Stanford Samaritan Dr. I have CSF fluid leaking out my nose now,worsening headaches, passing out, vomiting more. My bi-lateral optic nerves are demyelating & I am I’d like to return to see you. I’m having more headaches & vision issues, empty sella……..ElizGray. I have gotten worse past 3 days in bed ! Nauseous all the time. in bed for more than 1/2 the week. My entire spinal area up thru V1 & C3 T8 & 6A-L-5Balance horrible & falling daily. I has stand up, sit up right MRI (only 2 located in US).

[@KiplingGeorgia-e6p]

Martin Donna Anderson Charles Robinson Sandra