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

Posted by jordanametepe @jordanametepe, Apr 3 2:39pm

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

Interested in more discussions like this? Go to the Spine Health Support Group.

@carol1024

It's a metal like lead, iron and others but it's fatal in high doses and there are symptoms people start having after a certain length of exposure. Google the symptoms and possible ways of getting exposed to it.

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

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@jordanametepe

I don’t drink, smoke/vape, or take any recreational drugs. I’ve never had a serious injury, I can remember plenty of times slightly tweaking my back or shoulder while exercising. I’ve worked out for many years but when this started the fatigue and muscle weakness didn’t allow me to keep working out. I can think of plenty of occasions I might’ve hit my head on something but not severe enough to seek medical attention at the time. Could it be related? Possibly, it’s hard to think of every time something like that could’ve happened. Every blood test is in the normal range besides the few I mentioned which didn’t seem to a be a cause of concern. I haven’t seen a cardiologist but I’ve seen pulmonary and lungs/breathing were fine. Also, a chest X-ray was done which came back normal. My diet is well balanced, I include protein, carbs, fats, fruits, and vegetables. No issues there as I’ve been monitoring what I eat as well. Last year when this occurred I did lose some weight about 15-20 pounds, I gradually gained that weight back over the past year. I am a man so I don’t deal with any menstrual related issues. My iron levels were normal as well too. God bless you too, I’ll continue to pray. Happy Easter.

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@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

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@jordanametepe

Thanks for the response. I understand the possibly of these symptoms being related to something else. However, I’ve had extensive work up… multiple blood test, panels, CT’s/MRI’s, etc. I don’t have allergies or deal with inflammation. This was ruled out very early on. I took antibiotics due to suspicion of a sinus/ bacterial infection. My symptoms were the same before and after the course of antibiotics. I’ve been very subjective to ruling out multiple things and have seen various specialist for that. In addition, ALL my symptoms are actually pointing a leak, but I haven’t seen a provider who’s specializing in leaks. The headaches started years ago. However, the majority of the neurological symptoms were sudden and got worse extremely quickly. Most people don’t realize there are many types of leaks, including ones that are missed on imaging. Diagnosing a leak is very difficult and the average person will see over 7 different doctors before getting a diagnose. Nobody wants to be labeled a hypochondriac. In conclusion, due to my continuous debilitating symptoms it’s extremely hard to live a normal life. It’s easy to say you might just have allergies or an occasional migraine but there have been tests done early to rule that out. There are many patients who were once overlooked after seeing several specialist and a long time of suffering are now telling their story about how a leak was found years later because the right doctor heard them and didn’t give up. Having perspective in a field like medicine is so important. Unfortunately many physicians carry bias and are quick to dismiss a patient’s concerns based off their own experience and understanding. Being put in front of the right person can change a persons life.

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I understand.
I have prayed for you.

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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.

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@jordanametepe

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.

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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

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@jordanametepe

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.

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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

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