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

Posted by jordanametepe @jordanametepe, 5 days ago

First, I’d like to just share my story in hopes of getting help. For over a year now, I’ve experienced some of the most debilitating symptoms of my life. It’s been an incredibly difficult journey. I’ve had headaches going all the way back to my teenage years, for the most they were manageable and I never really thought anything about it. Around early last year (2024) I noticed they started to get worse and often the point where I couldn’t do anything but lay down in hopes of feeling better. In addition, I developed a bad smell in my nose when breathing, changes in hearing, vertigo, shortness of breath, changes in vision, ear fullness/popping, etc. The list goes on, most of these symptoms came on very quickly and progressively got worse over time. From there my journey began. I consulted with primary care a few times, they didn’t have much insight and from there I was referred to ENT (Ear, nose, and Throat). After waiting to be seen I was finally able to get an appointment. Physical examination and laparoscopy was performed, nothing was found. I was prescribed antibiotics and a decongestant. After several weeks no improvements. Also, at this time in started developing GI issues such as stomach pains, gas, mild nausea. Now onto my second specialist. He suggested an upper endoscopy to rule out multiple things, it went well nothing was found. Continued my work up with ENT, we did CT scans, MRI’s, and still nothing was found. At this point you can imagine the frustration, despite all this I kept my faith strong in even some of my lowest moments. I was starting to lose hope in doctors being able to actually help, I did all the labs and imaging they ordered. I knew something was off. At this point I had seen multiple specialists and now had been referred to neurology. During my first consult I brought up the chance of a possible CSF leak. Based off imaging nothing had suggested that, as my doctor had told me. Although it’s reassuring to hear that, a lot of my symptoms pointed that way. I mentioned there was nothing done to definitively rule that out. I don’t want to make any assumptions and could very well be incorrect but my symptoms were getting worse. Most doctors don’t even believe in the possibility of me having one. Nevertheless, it hasn’t been ruled out as a diagnosis. Now I continued face resistance when asking for testing to be done to rule it out. I’ve done extensive work up and nothing has been found. When I advocate for myself as this being a potential problem they tell me they have no reason to suspect one, but haven’t ruled it out? I’ve been overlooked and denied a second opinion to have a consultation. I continue to do the best in hopes of finding help. My faith has kept me grounded. As of today some of the symptoms I still experience -
• Pressure headaches
• Nausea
• Fatigue
• Ear popping/fullness
• Fluid drainage from ears and nose
• Changes in vision
• Dizziness
• Tingling in hands and feet
• Facial tingling and numbness
• Muscle pain and weakness
• Neck stiffness
• Metallic taste
• Sensitivity to light
• Memory issues
• Balance Issues
• Changes in smell

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Jennifer, Volunteer Mentor | @jenniferhunter | 5 days ago

@jordanametepe Hello and welcome to Connect. I know this is frustrating to not have a diagnosis for your symptoms. There are discussions here about CSF leaks, and typically they come after spine surgeries or a diagnostic test that may puncture the dural covering over the brain and spinal canal. From what patients say about them, the symptoms change if position changes such as laying down or standing up.

I think you may have better success, if you were to see a functional medicine specialist or environmental allergist. Those doctors look for causes and try to fine tune things to diminish inflammation, and they tend not to prescribe a lot of medication, and instead promote healthy living, and perhaps customized allergy treatments.

A couple sites where you can search for these types of doctors are Forum Health, https://forumhealth.com/ or
the American Academy of Environmental Medicine https://www.aaemonline.org/

If you have had injuries or physical trauma, perhaps a whiplash, there could be reasons for muscle spasms in the neck or shoulders. If spasms are moving or turning vertebrae, it may cause some of those symptoms such as dizziness face tingling, vertigo, head aches and nausea. A lot of symptoms can have multiple possible causes.

I have a lot of allergies, and I had an injury to my neck that years down the road resulted in spine surgery. I also have thoracic outlet syndrome that causes neck tightness and compression of nerves in my shoulder. If you have had Covid, that can cause a loss of smell.

I can understand why doctors are not accepting a CSF leak because your symptoms could have multiple possible causes, and if there is no history of something that may cause it, why would they look for it? A CSF leak is a serious business to treat and they don't want to put you through a difficult procedure if it's not warranted. If this information isn't what you need, please understand that in diagnosing and trouble shooting problems, you need to be objective and consider things that perhaps hadn't been considered before or eliminated from possible causes. Specialists only really consider what their specialty is about.

You may also be interested in this new group for headaches and migraines https://connect.mayoclinic.org/group/headache-migraine/

dlydailyhope | @dlydailyhope | 5 days ago

@jordanametepe
How old are you and how long have you had these symptoms?

Did you have an accident where you believe you now have a csf leak? What do you think would have caused a csf leak?

Did the ENT put a camera down your nose? Do you know why they prescribed you an antibiotic? That could have caused some of your new gastrointestinal issues. What were you told about why you have fluid draining from ears and nose?

Did your neurologist do an EMG/nerve conduction study of upper/lower limbs? A small fiber neuropathy skin punch biopsy and neuropathy blood panel?

Have you seen an endocrinologist to check thyroid/hormones and to see if prediabetic or diabetic?

Have you had MRIs of your spine?

Have you had a full iron panel to check iron levels?

Did you have Covid or the mRNA shots?

Do you have all of your imaging and bloodwork results and have you reviewed them in detail? Does anything show up as abnormal? What were all of the diagnoses and impressions?