How do I get doctors to take me seriously about a potential CSF Leak?
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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Thanks for sharing, I will definitely take a look into that.
@jordanametepe
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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