Spinal CSF Leak of Canada is a national health charity, fueled by volunteers and donors, with a vision to improve the health and lives of sufferers from spontaneous intracranial hypotension (SIH) caused by spinal cerebrospinal fluid leaks ("CSF"), and to help equip the Canadian medical community to combat this condition within the country.
We seek to achieve our goal through a number of means:
1. Raising awareness of the condition among the healthcare professionals and general public across Canada, and positioning Spinal CSF Leak Canada as a trusted source of information regarding the condition;
2. Fundraising to assist in advancing medical research relating to the causes, diagnostic testing, treatments and post-care treatment/outcomes of spinal CSF leaks; and
3. To provide patient advocacy and a forum for those suffering with spinal CSF leaks.
At Spinal CSF Leak Canada we understand what patients are going through. We want you to know you are not alone.
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I'd like to watch the video, but the brutal headaches and gognitive dysfunction is making it difficult..,.already two very hard tries at finding a leak (Dr. Beck's team), still not found, buy i *think* it could be either foramen magnum, or the result of 'overzealous' nasal swabs for MRSA or COVID-19... small drips from the nose, so that the nose feels like a dog's cold nose, and some 'full feeling' in left ear, and the symptoms go away after a few hours lying on left side...2x EBP, 3x myelography with fast CT, 1x myelography with cone CT... but, if it's intracranial, spinal investigation is not giving a result...
Had LP a week ago, BP yesterday. Headache switched from being relieved with horizontal position to being aggravated by it the evening of the BP and onwards (also have developed a dry cough only when upright). Watching this video, this is clearly what I’m experiencing. What is interesting is during the BP, they injected 20cc of blood - starting at around 10cc I could feel the increased pressure in my head. I don’t feel I was at all warned about this possible side effect of a BP. I almost think I’d prefer to have the positionally responsive spinal headache versus this new one that is bad regardless! Thank you for recording/posting this. Will ask about the Rx options if it continues tomorrow as I’d say I’m in the moderate category of 5-9 of pain.
With everything in me I’ve self educated realized the potential and I speculate my ear fullness is CSF LEAK my head pressure was so immense for a period of time I had constant daily head pressure headache pain dizziness on top of the already scary seizures I only got epilepsy diagnosis but know theres way more than idiopathic seizures… I felt a huge relief after steroids helped some I think. But my neuro at Toronto university health network won’t rule out autoimmune inflammation or didn’t even mention CSF leak could be possible, my ear fullness began 14 years ago in one ear then seizure few months after that. My neck has been a bother for me for years so I assume neck instability or such than CSF leak with the hydrocephalus pressure from my chiari…. It’s so not fun having to figure things out on my own and not having the professional neurologist help or even take into consideration any possibilities except plain idiopathic epilepsy. Steroids worked for me way better than their yucky body damaging anti epileptic pills they only care about prescription and swiping my card the dr at Toronto university network said :( life in Canada has a dramatically lowered quality of life under such circumstances I’ve come to realize. They pay specialists over $200 000 yearly to disappoint misdiagnose leave me to lose out on life. RUDE.
Hello. The QR code link is expired. Would you be able to share a new link to the papers discussed?
Much anticipated! Thank you for bringing education and awareness to Canada 💜
Praying for my daughter! The symptoms of this are horrible! Lord hear my prayer she finds a definitive diagnosis and a place to get help! 🙏🙏🙏
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.
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.
Thank you very much for this video and knowledge. I am struggling with anyone in my area to believe my symptoms. I just want to be myself again. I will keep trying to get into a specialist who understands CFS leaks like yourself.
Your KZread videos content are very nice. Currently, KZread is a very big platform where you can increase your business exposure and monetize and make a good income from KZread. There are some gaps in your KZread video and you need a KZread expert to fill these gaps. If you want I can help you.
@HalimaSMM; i don't think that 'monetizing' this video is the primary aim of this video, but, maybe to someone like yourself, "monetizing" is their biggest goal in life!
Thank you for your advocacy Dr. Callen!
Thank you for this excellent presentation from a CSF Leaker who is seeking more information about this debilitating ailment that has left me disabled.
Thank you for sharing patient stories and concerns!
For pain relief consider laser treatments and get sessions in medical grade Light Pod’s, (prism Light pod, Thor)hyperbaric oxygen anything that’s enhancing body system in that level of crisis in pain where is exploring if you can swing it
Good for you leaving no stone unturned to recover.
Im a ballerina, extremesports athlete. How did this happen to you?xx
Half of my pain in my arms. Gotta think the 200 pushups I used to do. Causes leaking.
This makes so much sense, why oh why do British dra not implement this, but brush you off with migraine.
Most don’t think outside the box. Look up narcissists& gaslighting. Also Many work for a business that tells them what they can or can’t sell
Humbly disagree . If London pain does injections ? Regional anesthesia like they do. Mitigate leaks. Just ask how.
Targeted patching are teetering on the edge of insignificance. Regional anesthesia oh yeah can handle it . Safer quicker too. Not a permanent fix ? So what . Won't take 17 trys
Try THERMOGRAPHY Non invasive, quick ??? I’d be test subject. I’ve done MRA MRI CT still No good reading
@@Rapunzel808 jeese no need for ct. You otherwise on the right track . Those images online are MRI without contrast. Your abbout to transform yourself into an expert. That's exactly what the cyst demands. Being your tip top best . Best at playing it's sick game. You give my hope.
@@Rapunzel808Are you saying thermography to show location of a leak? Have you done this?
@@Rapunzel808 I mistakenly referred to leak causing Tarlov cyst
@@WabiSabi03 that's I think an internal probe to monitor leaking. University of Miami has a MRI technique
Leaking happens beyond the brain beyond the spine. Peripherally . Someday it'll be treated. Bet it's a bigger deal than patching typically?
Hey leak doctors you can leak anywhere there's a nerve. The forearm for instance. 75% of leg pain is leak related.
Usually leak channels comments turned off. Looks extremely bad. Like everybody's lying. Good for this channel and Dr Grey.
Best video!!!
Dr. Ian Carroll is a life saver! He believed me when no one else would about me having a leak. Thank you.
I literally believed he cared. I sent my application for a CFL leak evaluation and waited 4 months. His staff sending me in circles over and over, only to be rejected and no evaluation or reason. His staff I thought called to apologize for how I was treated, to be gaslit. I have had non stop pain, no one accepts me or my insurance but here, and my dysautonomia and mcas was set off non stop. But his staff could care less. They just kept sending me to so many departments, and I waited 2 months beyond my lease, my housing on hold, so I could know where I needed to treat, how, and he didn't even review anything and refused my referral, no reason, to defend people who kept holding my case up, telling me incorrect information. Dr. Scrot recommended him, because he told thought I had a CFL leak, and the one person who would have helped didn't because his staff was rude, ineffective, and not willing to treat a patient with less resources. I want to vomit I waited through all that for no reason.
Thank you so much for this upload. I do wish they changed the language from 'headache' to head PAIN. There's nothing headache about it. I'm glad more is being done and more Dr's are getting interested in the phenomenon of rebound intracranial hypertension and that it's not as rare as previously thought.
Same! I've said this so many times.
You don’t know me, but you saved my life! Thank you for sharing your knowledge with Dysautonomia International. When I first developed POTS I went to their channel to learn more. Your videos kept popping up on my auto play. Initially I thought a leak was crazy, but after ruling out everything else I finally decided to see a CSF leak specialist in Boston. Dr. Madan at Tufts performed 2 high volume multi level blood patches and now I have my life back. I went from mountain running to bedridden overnight and basically had the same dramatic experience with becoming functional again. If it wasn’t for you I would likely never figured out my cause of dysautonomia. I will forever be grateful!
Amazing! How are you doing now?
@@courtneyloftus7336 I’m so much better after my 2 round of patching. I’m upright all the time. No longer taking “flat” breaks to get through the day. I was able to come if the POTS medication, but then I was shoveling ice and the postural tachycardia came back. Thankfully it’s now controlled by Corlanor. Before it wasn’t. I have a feeling I have a fistful, but now I’m able to deal with it. A month before my symptoms got really bad I had spinal anesthesia. I think that was my trigger. I was having random milder symptoms since the birth of my son in 2006. Started off with raging postural migraines and eventually progressed into 3am migraines that would wake me up and/or late in the day migraine. I lived like this for 13 years. Eventually I dated drinking a ton of electrolytes and caffeine which made me much better. Then had the spinal anesthesia in May 2020. Since then I’ve been really messed up. In August 2022 I had my last high volume multi level blood patches. Again, I feel much better. Most days I feel normal unless I don’t drink enough electrolytes or caffeine. Doing anything that requires bearing down will trigger symptoms again. I end up have to rest a few day then feel good again.
Thank you so much for your message. We are very happy to hear that you got your life back and our videos were helpful. Best wishes.
Can you share what test did they do to confirm the csf leak? And did you have brain fog too? Dod it get resolve after blood patch?
I have a similar story. After watching a presentation by Dr. Carroll on KZread, I too am in Dr. Madan’s capable hands and likely have avoided a very long delay in getting identified as a suspected leaker. I’m glad to hear of your recovery and I’m grateful to Dr Carroll for his work in spreading awareness.
I wish there were a similar organization for raising awareness of chronic csf leaks in India. Physicians rely too much on MRI here and completely dismiss their patients on no signs of brain sag. I was once met with ridicule by an experienced physician upon suggesting people sometimes suffer with leaks for years, and was told that it’s not possible to have the same for more than 6 months.
WHERE IS HE LOCATED
Sanfrancisco area California
Stanford university
Dr. Carroll, you are truly one of a kind, and an absolutely remarkable human being. Thank you for everything you do and for all the energy and care you have put into this research that is so important.
Thank you for this video!! Very helpful
I have a chronic leak caused by lumbar puncture. My headaches were not postural until a year into leaking. Now they are very orthostatic. Not being orthostatic (among many things) led to misdiagnosis and dismissal.
Danke
Thank you for doing these videos for us :)!! Become an online boss = P r o m o S M!
What is the pain level for this type of condition and how long until an expected recovery?
The pain level is like nothing else on earth. A 10 out of 10. It's the most debilitating and horrendous head pain you can imagine, back pain and muscle aches. After epidural blood patching it takes months and months to get back to something that resembles 'normal'. More than one patch is sometimes needed.
I need to find a back specialist or even a neurologist to take me seriously, my headache started 3 years ago, facial numbness 13 years ago and I'm being told BC doesn't do back surgery anymore or this treatment. For this I would move but where is it done? I know I have 2 slipped/herniated discs which the roots are already pushing on my thecal sac along with RA and spinal stenosis. Lately the pain is becoming much worse. Very interested in treatment, help.
Yes
Dr Carrolls info is great ….but bad for us in UK …cant get any support
Hawaii too
London pain does leak work pretty sure. They definitely do injections . That will do. Just ask how. Regional anesthesia out does all contenders. Six office visits per year
@@Rapunzel808 you again repunzel ? I know how the odds are stacked against you. There's a possibility of a most likely located sacral Tarlov cyst. How can someone say such a thing ? Just because you've haven't seen that in your imaging reports. Its 1% possibility of regular MRI showing. That's the deal there is a special MRI technique doctors don't know of. Tarlov causes leaking near the cyst. I'm pain free with fibromyalgia because I know their link. I wish I could be more informative on leaks alone. The book says a board certified neurologist is the one who screens for something unseeable like Tarlov. I don't say this to torture. This root cause is devastating. Do not fear that cause injections can deal with Tarlov perfectly. I say this because zero pain. Do not let anyone stop you. Don't be discouraged neurology hasn't heard of tarlov. Mine said that. They all say they've never heard of it . Your opinion is the only thing that counts . The injections are a sacral dorsal root ganglion nerve block and blocking the brachial plexus. That's it only two procedures six times a year.
For those that require surgery, is the failure related to rebound hypertension and increased pressure to fragile tissues? Has there been some sort of consideration of a pump of some kind that can be remotely programmed and placed at time of surgery to help drain CSF fluid to decrease pressure that could adversely affect the repair and gradually titrate the pump output down as the repair heals to help maintain the integrity of the repaired dura and drain into some area that you folks would know would be appropriate?
No pump. Not yet. They sometimes place a shunt to drain . This might require 100 surgeries for correct placement. That's brain surgery.
Thank you Dr Carroll!
I thank you very much for this video,as a french it's so difficult to find informations about this disease. I'm now suffering of IHS due to spontaneous CSF leak since 2 months and it's the first time I ear that it could be due to stretching and yoga,and as a yoga teacher you understand I'm very worried about that information ...
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Thanks for this information
It is our pleasure. Thank you for viewing.
Call me a weirdo but I find the surgical images so interesting.
Dr. Francomano is the best!
I still get a 9/9 on the beighton at nearly 40 years old and seven years post skull-C2 fusion. Lol.