Spinal CSF Leak-Living with a chronic illness

Yes, I had been diagnosed with Intracranial Hypotension caused by a cerebral spinal fluid leak in December of 2024. All these years we thought I had Menieres, another very odd and unknown chronic illness. But the menieres took a twist and I began to have dizziness daily, brain fog, tinnitus didn't change, its been present for 10 years now. Because the symptoms changed my PCP decided to get an MRI of my head, the last one was in 2017 and was normal. Pretty common to get an MRI when they are trying to decide if you have Menieres or not. They have to rule out other possibilities. Well, my MRI was not normal in the least bit. The radiologist thought that I could have some sort of chronic meningitis and wanted me to immediately go to the ER. So we did and the Dr there had no idea what to do for me. While I was there the neuro radiologist looked at my MRI and said, this is Intracranial Hypotension which is usually caused by a cerebral spinal fluid leak!!!!!! WHAT!!!! I'm leaking spinal fluid????? Seriously????????? We got an appointment the following week with my PCP who said he knows nothing about this diagnosis. But first, we need to do a lumbar puncture to rule out inflammatory diseases and auto-immune diseases. Had that the day after Christmas!!! Not a fun procedure for sure.

Symptoms of Meniere's disease include: Regular dizzy spells. You have a spinning feeling that starts and stops suddenly. Vertigo may start without warning. It usually lasts 20 minutes to 12 hours, but not more than 24 hours. Serious vertigo can cause nausea. Hearing loss. Hearing loss in Meniere's disease may come and go, especially early on. Over time, hearing loss can be long-lasting and not get better. Ringing in the ear. Ringing in the ear is called tinnitus. Tinnitus is the term for when you have a ringing, buzzing, roaring, whistling or hissing sound in your ear. Feeling of fullness in the ear. People with Meniere's disease often feel pressure in the ear. This is called aural fullness.

All the odd possibilities were ruled out, so now I am in need of a Neurology appointment. OHSU in Portland refused to see me saying they were short staffed. The first available appointment I could get was in April about an hours drive from us. I ended up getting online and researching Intracranial Hypotension and CSF leaks and found the Spinal CSF Leak Foundation. https://spinalcsfleak.org/ They have a lot of information and a list of providers. I found a provider in Seattle Washington, a 4 1/2 drive in mild traffic from our home. I called to see if they would accept someone from out of state and they said yes. They were very kind, let me know how to send the referral and to whom for my PCP office. They were able to do a telemedicine appointment in March. I saw a neurologist who at first said it was unlikely that I had a leak because I don't have the most common symptom of leakers, headaches, bad headaches. I just do not get headaches. Then he looked at my MRI and said, well, you probably do have a headache. He said that they can offer me a Digital Subtraction Myelogram. That it is done twice, once on the left and once on the right separated by 1-2 days because of the contrast. Now I will be totally honest, this freaked me out to the core. You are put under general anesthesia, intubated, twice in just a few days, looking for a leak. It just scared me so badly. I still had the other appointment pending in April. So I went ahead and scheduled the appointments for the myelograms but in May, after the April appointment so I could see what the neurologist in Springfield thought about it. I was truly hoping that he would say, no, you have this and you don't need that and everything will be just fine!!!!!!!!

He did not say that. HE was actually happy that I had touched base with the neurosurgeons office in Seattle and had the appointment already. If I hadn't, he would have sent me to Standford to get it done!!! STANDFORD CALIFORNIA!!!! OH MY GOODNESS. So off to Seattle we went the middle of May to get my procedures done. The rest of the story another day!!!!!