Dr. Ian Carroll from Stanford University answers questions during a Live - Meet - the expert session hosted by Spinal CSF Canada during 2020 spinal CSF leak awareness week.
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!
@@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.
I have a similar story. After watching a presentation by Dr. Carroll on RUclips, 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 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 ...
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
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.
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.
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.
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?
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
@@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.
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 RUclips, 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.
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 ...
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.
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.
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.
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.
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.
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.
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.
WHERE IS HE LOCATED
Sanfrancisco area California
Stanford university
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