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

Thanks for sharing, I will definitely take a look into that.

@jordanametepe
You may want to read more about anemia in males. 1. https://www.epainassist.com/blood-diseases/causes-of-anemia-in-men-know-its-types-symptoms-treatment
2. https://healthhype.com/6-causes-of-low-iron-anemia-in-men.html

Did you have a colonoscopy to check for internal bleeding?

Did you have the Covid mRNA shot and did you have Covid? It (spike protein) is known to affect the heart/cardiovascular system, especially in boys and young men. It also affects the endothelial cells that line blood vessels and organs. My teenage son has a heart defect and I did not get the mRNA shot for him but he did have Covid twice. He seems to have some cardiovascular changes and long Covid symptoms.
3. https://my.clevelandclinic.org/health/diseases/23230-endothelial-dysfunction
4. https://www.verywellhealth.com/endothelial-dysfunction-1746344
5. https://stanfordhealthcare.org/medical-conditions/blood-heart-circulation/endothelial-dysfunction.html

I understand.
I have prayed for you.

My ongoing symptoms continue to worsen, most days it’s hard to even function properly. From the time I wake up until the end of the day I experience nausea, headaches, dizziness, visual disturbances, changes in hearing, clicking in the ears, loss of balance, muscle weakness, facial/body tingling, problems with concentration, memory loss, bitter metallic taste, a rain drop sensation throughout my body, and etc. However, my concerns are brushed off with no sense of seriousness in what I’m experiencing. I’ve been overlooked for so long as I continue to suffer and feel as if I’m being neglected of a serious ongoing issue. If anyone has any recommendations or resources of providers who will be committed to helping me please reach out. Advocating for yourself is so tiring, I’ll continue to pray and keep my faith strong. One day it will all make sense for the glory of God.

Dear jordanametepe @jordanametepe,

xxx SORRY... xxx
I'm so sorry of what you do "ongoing symptoms continue to worsen, most days it’s hard..." Being "sorry" is one way but people problems is "hard". I'm there too.

xxx PROBLEMS? xxx
My balance problem killed my walking. My leg on the bottom of my right-foot causes - no pain, thankfully - little feeling. that causes falling onwon and hits my brain. That happens like the last 3 months; before this happened many times over the last 2+ years ago. It os few now as I exercise my right-leg. There is a little more of what i do that the last 12 years now and ago and i've written - several times - on MAYO.

xxx OTHER PROBLEMS... xxx
Other problems for you, including:
1. Balance problem
2. Headaches
3. Dizziness
4. Muscle weakness (I'm back of stretching, lifting - thankfully)
5. Brushed
6. Memory loss (my memory and ability is 80% gone from my accident 12 years ago)
7. concentration (even i dont understand that word)
8. and the other words...

Hearing of what you wrote is not to undesrtand of this. Other pros can help you 🙂

Tjx,
Greg D. @greg1956

Hi there. I'm sorry you're struggling.
Mayo sent my bff, who had an unusually severe CSF leak, to Duke. Apparently they are The Place To Go.
https://radiology.duke.edu/patient-care/specialized-services/spinal-csf-leak
I hope you know about the Spinal CSF Leak Foundation. 👍🏼 Here's a page from their website; it lists a few resources --
https://spinalcsfleak.org/resources/resource-documents/
I hope you're able to get the relief you need! Hang in there sweetie, you're not alone
🌻🫂🌞
Lauralai

FYI, a chronic middle ear bacterial infection can erode your bones and work its way to your brain, penetrate your dura matter (causing a CSF Leak), and then from there cause bacterial meningitis, which will cause basically all of the rest of your symptoms. And your ear popping and fullness is highly indicative of an ear infection.

I am in the same battle you are in and trying to get doctors to take it seriously. Doctors in the US (in my experience) seem more interested in gaslighting you in order to get you out the door and on to their next patient when the symptoms are complex. They seem to think that not seeing something on an image is conclusive proof that something doesnt exist, but dont let them gaslight you like this. If they havent tested the fluid leaking from your nose or ears for CSF, then you need new doctors as they are not doing their job. It is a very simple test to do, and it baffles me as to hear someone experiencing the same battle as I am with the same level of incompetence from their doctor. When you get a new doctor, switch to an entirely new doctor's group so the new doctor isnt looking at their internal notes and avoiding tests to protect their colleagues. Make sure any image you get done isnt anywhere near after taking antibiotics. Doctors love to just assume everyone is psychosomatic because that makes their job the easiest and they dont need to engage in problem solving. Many doctors today arent actually empathetic people and tend to be heavily narcissistic. Many dont go into medicine to help people but instead go into it for the money and prestige of it, which is heavily a narcissitic trait. Find a doctor who listens intently and doesnt just immediately try to tell you all the ways "it is nothing" before you finish talking and without asking detailed questions. If they dont sound like they are understanding your symptoms, then they are incompetent. You arent experiencing all of that just by coincidence.

The fact that the US Healthcare system is like this is absolutely pathetic, but that's what we get when we allow Healthcare to be profit driven.

If you want to connect and share experiences, let me know as I believe we are going through basically the exact same thing.

I have a lot of the same symptoms and I was diagnosed with Arnold Chiari Malformation by MRI. It's a very overlooked and under diagnosed diagnosis and a lot of Dr's have not been educated enough and don't take people seriously. Just a suggestion, but you might ask your neurologist, if you have one, or ask your PCP for a brain and c-spine MRI or look at them again if you've already had these films. Worth a shot! And then find a neurologist that SPECIALIZES in Chiari Malformation

Without reading through all the comments have you had anyone look at the base of your skull at the sphenoid sinus with the imaging you’ve had done? I was in your position but my dentist was concerned my airways might be blocked. Confirmed yes but I assume because he’s not a dr he didn’t fully interpret it. I’ve had a hard time finding a dr that will look at it because everything in me knew it was something else going on and I’d get answers if it was interpreted. I ended up consulting with an online dr. I wasn’t able to get the full ct scan sent to her so I sent her maybe 6 or 7 slices combined between the three views. I sent two slices first and already had answers. By the time the last slice was sent I was told I needed to seek help immediately. With those few slices of my ct my suspicions of a csf leak are almost confirmed. It was confirmed though my right nostril I can’t breathe out of because there’s brain tissue that’s extending into my right sinus.

Following. I've been plagued by many of the symptoms listed herein, along with a sensitive skin issue on my back It feels like a permanent sunburn.. anything touching it (shirts, bed sheets, etc.) causes much discomfort. I have the feeling of rain drops on my arms. Nausea, dizziness, rapid weight loss in May of 2025 (from 185 to 157 over a 2 month period where it has stayed since that time) and continual URI symptoms... Patches and pills do not ease the pain and discomfort. I've been in and out of doctors offices, ENTs and the ER many times over the last several years. The doctors usually prescribe several prescriptions and I am sent home to rest. I even quit taking my prescriptions to see if something would change. (I know, it's not a good idea.) Even the pain specialist said that my problems do not usually present itself in the way I described it to her. Disappointing to say the least. Type 2 Diabetic, HBP, and with a Hypo-Thyroid condition.
After ruling out shingles among other common maladies, I finally asked for and had an MRI of my thoracic spine several weeks ago. The initial imaging showed possible leakage of spinal fluid in the thoracic region. I'm still waiting on the official results of the MRI. It's been over 2 years since the onset of these symptoms... I think I can wait another 2 or 3 weeks.