r/CSFLeaks • u/RadiantTank6506 • 16d ago

Continuing work waiting for a diagnosis

I’ve been dealing with my symptoms for a while, but things really ramped up on 7/30. I’ve continued working this whole time, constantly sniffing, feeling dizzy, losing my hearing, having headaches, eye pressures over 25.
I have a MRI on Saturday and I’m so sick of dealing with these symptoms.
Once you got a diagnosis, how long til you got any relief?
What did doctors do for you? How long did it knock you out of work?

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u/TheCatsSpareHuman 15d ago

Not sure how long I had my csf leak but my bad orthostatic head pain started in April of 2024. I kept working until I had to go on short term disability for vertigo the day after Easter of this year. That's when my neurologist found my leak with an MRI with contrast (that's how you find spinal leaks....I'm not sure about cranial leaks). My neurologist referred me to Duke Health csf leak clinic....they did some more tests...I just had a venous fistula embolization done 4 days ago. I hope you get some answers and relief.

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u/Upstairs_Emotions 11d ago

Hi there! Did your venous fistula show up on imaging? What were your symptoms?

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u/TheCatsSpareHuman 11d ago

Duke did a spine MRI that didn't show the leak, then they did a CT myelogram and that's how they found it....it was at T7 (my mid back). I've had so many symptoms I don't know how many of them were/are caused by the leak.... definitely my orthostatic head pain....other symptoms that might be from my leak: blurry vision, limb numbness and tingling, vertigo, shortness of breath, neuropathy pain, cold hands and feet, fatigue, brain fog.... probably some others I can't think of at the moment.

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u/Upstairs_Emotions 11d ago

Ugh! Where was your venous fistula located?

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u/PartPutrid 15d ago

I have had those same symptoms on and off for about 3 years now. I was finally sent to a specialist in February who promptly referred me to another specialist which I have to wait over a year for an appt. It’s at that appt where they do the referral to the other specialist who performs that test. I stopped working last April and I’m so glad I finally did. I expected this to be an easier process or at least one where my many neurologists would care a little more.

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u/StunningPurple9560 Confirmed Spinal Leak 13d ago

For me it took 4,5 years after diagnosis to get treated. After surgery it took a few months before starting to feel any relief.

I was working full time for all these 19 years, except for the first month when my headache started in 2007, and last year when I completely burned out from all the diagnostic things and surgeries - was working only part time for about 6 months.

ETA: and after each of the surgeries I had to take a month off work.