How do I get doctors to take me seriously about a potential CSF Leak?

Everyone here seems focused on how CSF leaks only occur after trauma which is not the case. 4% of CSF leaks are “spontaneous” meaning they just happen for no apparent reason. This is more likely if you have a connective tissue disorder like hypermobile Ehlers-Danlos syndrome (hEDS). The most common symptom of CSF leaks is the orthostatic headache, a headache that gets worse when standing. If you have an orthostatic headache, I’d focus on that when it comes to getting taken seriously. That as well as the fluid drainage from your sinuses which should 100% be tested to see if its spinal fluid.

Hello, I’m at patient who for the last few years have been dealing with many ongoing debilitating symptoms. This includes headaches, chronic fatigue, severe neck stiffness, nausea, vision problems, hearing disturbances, vertigo, difficulty breathing, burning/tingling sensations, cognitive decline, GI issues, and etc. There’s been consistent fluid accumulation in both my ears that has been present in many office visits and documented. Unfortunately, no source of the fluid has been found. ENT department has no explanation and just offers nasal sprays that completely burn my sinuses while worsening head pressure. Brain & spine MRI’s came back negative with no unusual findings. In addition, I had a beta transferin test which was also negative. As reassuring as it is to hear that, there’s still no relief in any of my symptoms. Also, very common for some patients to have normal results due to standard imaging not being as sensitive to detect abnormalities. Even in the midst of adversity I firmly believe there’s always purpose behind every challenge we face for the glory of God. I’ve had extensive workup with many specialists (ENT, GI, Optometrist, Integrative medicine, General Surgery, Infectious diseases) including three different neurologist. However, none seem to believe this could be related to a leak even though a handful of symptoms point in that direction. Regardless of past outcomes, I’m still very grateful to the providers that have taken the time to see me as a patient and offer their help. Above all, I’ve been proactive as possible in regards to getting better, from doing different testing/labs, holistic approaches, medications, lifestyle changes and still no improvements. One thing I’ve noticed is my headaches aren’t always positional. The evidence is there with clinical symptoms that align a CSF leak but no imaging to confirm it which is the hardest part about this journey. I’m very open minded so I understand I could be wrong which is okay with me. Therefore, being an advocate for myself is the best I can do. Nevertheless, even when the path seems uncertain God will make a way as he always does. Through trials and tribulations my faith has remained strong, not by my own strength but with his. In recent years a spinal leak known as a CSF venous fistula has become more common with new research and development in medicine. However, I don’t have the tools or resources to locate a provider that will advocate for me. Despite that fact, I have faith like many other patients fighting for themselves that better days are ahead where my own testimony will inspire others to keep believing in their journey. I’m looking for support in the community in hopes of assistance and being directing towards providers or resources that will help me get answers. Patient advocacy is one of the most overlooked issues in the healthcare world today. I’ve learned to be overlook without feeling the need to always explain myself which has been a very important lesson for me. But that won’t stop me from finding answers not matter how the circumstances look. I hope this community can guide me in the right direction. I know God has already secured my victory even though some days feel like a continuous battle. In conclusion, If anyone can please help or provide resources it would be greatly appreciated. All I can do is a take a leap of faith and continue to push forward. Thank you so much for anybody who took the time to read this post and please keep praying for me.

@jordanametepe I think a good physical therapist who specializes in neck issues may be able to figure out where symptoms may be coming from. I have had vertigo caused by vertebrate shifting and twisting from muscle spasms. I also have TOS. Thoracic outlet syndrome that affects circulation through the brachial plexus in the neck and shoulder. Some patients with that can pass out by turning their head. A specialist for TOS is hard to find, but look at a facility that lists TOS as a condition that they treat. That is most often missed by doctors and poorly understood. If you had a whiplash, it may be a cause of your symptoms. For me, TOS causes rotations of C1 and C2 and that limits blood flow in the vertebral artery that is part of the supply to the brain. A PT can tell you if your vertebrae are twisting. I am also a surgical patient with a C5/C6 fusion.