Transcript
Thank you to each and every patient who took the time to record and submit a video for this compilation of perspectives about living with spinal CSF leak. We appreciate your voice and advocacy.
What do you want your loved ones to know about living with spinal CSF leak?
Linda P: I want my loved ones to know that I love them, that I want to participate, but sometimes I just can’t. Other times, I’m happy to lay on their couch or their floor so that I can just be with them. Please invite me.
Aubrey B.: I want my loved ones to know that I am not exaggerating the impact that spinal CSF leak has had on my life. I know you haven’t felt it yourself, but consider how horrible spinal CSF must feel if patients are willing to undergo invasive spinal procedure after procedure after procedure just for a chance at relief.
Kelly M.: What I want my family to know about my having a CSF leak is that I really miss you. And it feels awful having to cancel last minute almost everything that I schedule with you and the grandkids from dance recitals and soccer games and holidays. And I lay on the couch just so sad, hoping I haven’t disappointed you again. And while I’ll probably never be cartwheel grandma again, I do hope that you don’t grow up too fast without me before we find a fix.
Kyle S.: I want my loved ones to know that despite the challenges my leak caused, I’m immensely thankful for the care you provided for me. I know it was impossible to understand what I was going through, and we certainly did struggle to communicate. But you took me to appointments, listened to my concerns, even when they were hard to believe, and you did your best to advocate for my care. Thank you for that, and I love you.
DeLaina P.: What I want my loved ones to know about is that like many CSF leak patients, I was not only fighting a physical battle, but I was also fighting a mental one. It was one of the hardest times in my life, and there were times I wanted to just give up. I had to reach deep down in my soul to keep fighting and thinking about my family is what kept me going. I’m sealed now, but I’ll never be 100%. But I’m moving forward a stronger person.
Tara S.: I want my loved ones to know that one of the most difficult things about this illness is the isolation, and that even if you don’t know if I can make it or if you don’t know how to accommodate my needs, please keep reaching out. Please keep inviting me, and let’s brainstorm together how to include me and people like me who struggle being vertical.
Jen M.: I want my loved ones to know how incredibly hard it is to push through the relentless symptoms just to be able to function. We don’t want pity or doubt about our reality and that we need your help to advocate for us at our appointments and to educate yourselves on this condition. It’s torturous watching life pass by while we’re sidelined, helpless, and waiting for relief. We can’t wait to rejoin you fully, so please be patient. We want you to know your validation can mean more than any cure while we wait.
Jodi E.: I want my loved ones to know that I really appreciate their willingness to make accommodations in their lives for my spinal CSF leak. They use their inside voices because they know that my head hurts a lot if they speak loudly. My niece knows that Auntie Jojo has an ouchie in her back and I can’t lift her like other people can. And they all come to me because I can’t go to them. They don’t push me or pressure me to get further treatment. They believe me when I say that my body isn’t in a place to safely receive it. All of that makes a really big difference in being able to manage this condition long term.
Liliya T.: I want my loved ones and everyone to know that spinal CSF leak is invisible illness. It steals your mind, your strength, your life. You might look fine, but inside you’re fighting to stay alive. I lost my ability to think, to write, even to hold a fork. What hurts most is disbelief. Some lose hope completely. What can save us is compassion, seeing the invisible, and believing. That’s it.
Michael D.: What I’d like caregivers and loved ones to understand is that not only is this illness incredibly debilitating, but it’s invisible, which adds an additional layer of complexity to the treatment and to the isolation that the patient endures. Just as MS was prior to the technology that allowed them to identify the lesions on the brain and associate them with the symptoms, we’re at that point, and I would like to see us advance.
Kelsey K: I want my loved ones to know that living with a spinal CSF leak is extremely painful and extremely exhausting and it pours into every aspect of your life. But not only that, once you live with it, it really makes you appreciate the little mundane things that we are able to do in our everyday lives. And I mean something as simple as sitting up in your bed really becomes a victory. And so your support means everything to someone while they’re going through this.
What do you want people to know about being sealed?
Aubrey B.: I want people to understand that getting sealed is so wonderful, but it comes with its own mental and physical challenges. There’s rebound intracranial hypertension on the physical side, but there are many mental challenges as well. There are so many habits that I developed while leaking that I’m still trying to unlearn two years later. And I don’t want to live my life in fear, but honestly, there’s not a day that goes by that I don’t think about the possibility of my spontaneous leaks recurring for a third time.
Melanie H.: I want people to understand that getting sealed can be a bit of a rollercoaster. High pressure symptoms can often mimic low pressure symptoms. And so it’s quite scary after I was sealed, because I would for at least a year or more get a lot of symptoms that would feel similar to those that I had when I was leaking. And so I think that the more progress we can make in the field between differentiating high and low pressure symptoms, the better.
Tamara T.: I want people to understand that getting sealed does not mean you’re going to feel 100% that same day or even the next day. It may take weeks to feel better. That being sealed may potentially have rebound headaches that are bad, or even worse, than original headaches that you had with the leak. And the mental exhaustion that comes with the ups and downs of feeling either really good one day, or really bad the next, and continuing to move forward with life like nothing else is happening.
Julie D.: I want people to understand that getting sealed is a huge blessing. But for some patients, we don’t get to go back to our normal lives. We have new symptoms that we have to learn how to live with due to what our body’s been through.
Isaac B.: I want people to understand that getting sealed, even though you deal with spinal CSF leak long term, helps get back from pain to normal life.
Leah L.: I want people to understand that getting sealed is worth it. And while there is a totally valid fear of having rebound intracranial hypertension, it’s important to keep in mind that not all patients do have it. And also that the vast majority – it is truly temporary and it does resolve itself. And also that there are medications to help treat it which is really helpful. And I’m not trying to downplay the severity of those symptoms. I’ve been in high pressure for years due to an underlying condition. But I will say nothing compares to being sealed. And I truly think if you’re able to endure a CSF leak, you can handle anything that comes after.
Debra R.: I just want people to know that getting sealed can literally change your life. After being misdiagnosed for three years and having four failed blood patches, I had an invasive surgery to seal my venous-fistula spinal leak. I immediately noticed I could recall conversations, no longer suffered from dementia, and felt like I got my life back. I said then, if I had to do it all over again to help even one person, I would. And two years later, I developed another leak. We consulted a neurosurgeon who was willing to attempt a minimally invasive onyx procedure. Now a program has been created, and I’m beyond blessed to be a part of that to help others that suffer with this debilitating condition.
Gwen P: I want people to understand that getting sealed is not always the end of our story. Some of us experience rebound intracranial hypertension that can last for months or years with little medical follow-up and support. Many of us experience life altering trauma from the terror of the CSF leak. Without widespread awareness and recognition, we remain isolated by our experiences.
Brooke M.: I want people to understand that getting sealed is absolutely possible in 2025 – now more than ever. Whether your leak is confirmed or suspected, there is hope. There is a path and it will take time. Getting and staying sealed, managing your underlying, overlapping, or co-occurring conditions may now be a part of your life. And disability may be a part of your identity even after you recover. I want people to understand that getting and staying sealed requires a person to take care of theirselves like their life depends on it – because it does.
Brenda T.: I want people to know that getting sealed gave me life back. To say that a CSF leak is a headache is a gross misstatement. The pain is so much more than what can be described as a headache. So getting sealed not only saved my life but it also returned me to the quality of life that I had before the leak. Getting sealed is nothing short of life-changing.
Rachael: What I’d like people to know about being sealed is that it may take time, but it is possible to get better. Try and remain hopeful even though it’s difficult. I’ve had three surgeries and seven blood patches. And I had my last blood patch in November of last year. It wasn’t an instant fix and it’s been slow and steady progress, but I’m now 11 months on leading a fully functioning life. So remain hopeful. There is light at the end of this tunnel.
Julie S.: I want people to understand that getting sealed is possible. I had a spontaneous leak and then an iatrogenic leak that caused me to be bedridden for over two years. It was the hardest time of my life physically and mentally. I got sealed because I didn’t give up. You have to advocate so strongly for yourself. Even when it feels hopeless, even when it feels impossible, the next specialist, the next procedure, or the next innovation can be the thing that fixes you. Don’t give up. If I was able to get better, so can you.
What does progress in the field look like to you?
Caroline M.: The progress I want to see in the medical field is greater awareness and education about CSF leaks, especially among neurologists. Too often, patients are misdiagnosed because CSF leaks can present in such a wide range of ways, not just the textbook orthostatic headaches that we all learn about. If more physicians understood the diverse presentation of CSF leaks, diagnosis and treatment could happen sooner and countless patients could get their lives back.
Pamela L.: The progress I want to see in this field is earlier and widespread recognition of CSF leaks and for these conversations to take place outside of CSF leak communities too – across primary care specialties. I am a CSF leak patient as well as a physician. And as a physician, I often felt invincible, but as a patient I often felt invisible. I hope to see diagnostic treatment protocols and referral pathways across primary care specialties as access to care should no longer determine who recovers and who continues to suffer.
Melanie H.: The progress that I’d like to see in this field is in diagnosing leaks. I was one of the many people who had MRIs that did not show signs of a leak, and I did in fact have a confirmed CSF leak on a myelogram. So I think often times patients are turned away by doctors after they see MRIs that don’t show any signs of leaks and I feel like this creates a lot of unnecessary suffering.
Beth G.: The progress I want to see in the field is a safe space for patients to talk about all of the mystery symptoms in one place. High and low pressure, head and spinal leaks, vascular issues, cervical instability, and more. Patients deserve to report all symptoms in one space, and providers should have easy paths for referrals. We all need new hubs of information and hope.
Jennifer S.: The progress I would love to see in this field is for more awareness around this diagnosis so that way each state can have a center with a physician to diagnose, a physician to treat and follow up care. I would also love more awareness around this diagnosis so people with an ongoing spinal CSF leak can still get accommodations that they need to go on outing events.
Michael D.: The progress that I would like to see in the field is more study in and around the quality of life and the impact of the pain and the suffering that patients deal with. In my own experience, you lose your ability to work, you lose your ability to think clearly, and you lose your ability to function in life, and that has a profound impact.
Jodi E.: The progress I’d like to see in the field is twofold. One, a wholesale adoption of atraumatic needles instead of conventional cutting needles any time that there is invasive imaging or a lumbar puncture that needs to happen, thereby mitigating against cases of PDPH or chronic PDPH that may occur. And secondly that imaging itself evolves as technology evolves to become less invasive so that we can locate a leak site without making a hole in the dura in the process.
Nurul A.: The progress I want to see is for doctors to truly acknowledge spinal CSF leak including iatrogenic cases and start accepting the latest research. We need a stronger focus on preventing PDPH and ensuring patients are not dismissed or gaslit. I want to see more experts, especially in my country, where PDPH still feels almost alien. It’s time for real acceptance, awareness, and action so patients can finally get the care they deserve.
Marta F.: The progress I’d like to see in the field is the development of better imaging techniques that can more easily identify CSF leaks along with imaging and treatment methods that are non-invasive or at least less invasive than the ones that are currently available.
Leah L.: The progress I want to see in the field is more widespread access to care. The majority of spinal leak patients do not have the physical ability or the financial resources to travel to the specialty leak centers and they have, you know, months and months of wait lists. We know the importance of getting treated quickly. So while there are patients that do have complex cases with really elusive leaks that do require the specialty care, I do think there are a lot of patients that could be properly treated closer to home if there was just more awareness and training.
Gwen P.: The progress I want to see in the field is advances in measuring intracranial pressure without invasive procedures. Such tools and techniques can improve the diagnosis and management of CSF pressure related issues. They could also help us better understand CSF leaks in specific sub-populations, such as those with connective tissue disorders.
Isaac B.: The progress I want to see in the field is better imaging and tests enabling more certainty in diagnosis.
Kellie K.: The progress that I want to see is for CSF leak providers to share their knowledge worldwide with all providers, primary carers, urgent carers, ERs, hospitals, so that when a patient comes in and presents in the most excruciating pain of their lives in some of the hardest times of their entire lives, that they wouldn’t be met with other providers that accuse them of being crazy, of looking for drugs, of looking for attention, but that they would actually seek to help their patients.
Kayde S.: The progress I’d like to see in the field, besides of course my leak being permanently sealed where it’s never going to recur, is just the expansion of expertise and knowledge about CSF leaks to other institutions and areas so that people like me aren’t suffering for years waiting, being misdiagnosed, being blown off, and having to just fight and advocate so hard just to get to a center that can actually help you, which is often very far away.
Liliya T.: The progress I want to see is education — education of medical professionals to truly understand CSF leaks. Way too many lives are lost in confusion and delay. This invisible illness devastates patients, families, and even doctors. The health care system loses time, energy, and enormous amount of money on unnecessary tests and misdirected treatments. Early recognition can save suffering, save money, save lives.
Emily D.: The progress I want to see in the field is providers knowing how desperately patients need hope from you. Providing hope can save lives. Almost one in four patients demonstrate suicidal behaviors. More than three out of five wish they were dead. When scans are clear and there’s not more you can provide, you can provide hope. My provider saved my life many times, reminding me there is hope even if scans were clear. I repeated his words to myself often. I wouldn’t be alive today without them.
Linda P.: The progress I want to see in the field is a long-term study of patients with reoccurring venous fistulas. Why do they reoccur after patching, embolization, or surgery, and in what cases do they reoccur more often?
Jen M.: The progress I would love to see in the field would be to have multidisciplinary care teams collaborating to piece patient care together. SIH can be complex and is not solely neurological. Especially more long-term leaks can trigger wide systemic issues for patients.