My Unseen Illness Part 1: CSF Leak

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I have not posted new content on my blog in almost a year.  There’s no doubt that 2020 has been a very crazy year so far, but I have had some medical issues that have affected me both physically and mentally, and have been a force in my life keeping me from being as active as I used to be.  In this entry I will be going into the first part of my unseen illness, which is all about my experience with a cranial cerebrospinal fluid leak.

I also filmed a video version, if you would prefer to watch:


For at least ten years now, I have had a consistently runny nose out of my right nostril.  I was sniffling all day long.  It would increase whenever I bent over, ate, or did any physical exercise, but it was constant.  I had become so used to it over the years that it was second nature to me to wipe at my nose.  Sometimes my husband even embarrassingly had to tell me to wipe my nose.  It was always a clear, watery fluid, and always only on the right nostril, never the left.

At first I thought it was allergies, so I took allergy medicine.  I took every allergy medicine out there, but my nose still ran. Then I underwent allergy testing, but all it told me was that I had a minor allergy to soy.

After that, I figured that my leaking was due to a deviated septum. I saw a otolaryngologist who confirmed that I had a deviated septum and scheduled me for septoplasty with turbinate reduction and Clarifix. I was looking forward to this surgery and hopeful that it would solve my runny nose issues.

Unfortunately, after I healed from surgery, my right nostril kept on leaking. I mentioned it to my doctor, and while she thought it was odd that it was only leaking from one side, she concluded that I had vasomotor rhinitis and gave me a nasal spray to use three times a day. This did not help either.

This was when I started googling, and ran across an article about a lady with a runny nose out of one side that ended up being cerebrospinal fluid. To me, it made a lot of sense that this may be my problem too. I mentioned it to a couple of doctors, but one was highly doubtful that a CSF leak was my issue, and one hadn’t even heard of it. So I let it go.

In July of 2019, I started having headaches and vertigo as well. One day at work, I had a terrible headache, along with dizziness and nausea. I called the doctor to make an appointment, and they recommended that I go to the emergency room to make sure it wasn’t something more serious. At the ER I was given ibuprofen and had a brain MRI and an EKG performed on me to make sure I wasn’t having a stroke. When everything came back normal, they referred me to an ENT.

The next week, I saw the ENT. I explained my symptoms, and started mentioning the nose leaking from one side. Immediately, the doctor and the PA were alert and said that it sounded like I had a CSF leak.
This gave me hope, because I had finally found a doctor that was knowledgeable about CSF leaks and could have answers for me. I started trying to research CSF leaks more, but found very little on symptoms and people’s personal experiences. Then one day I was on Facebook, and there was a link on my sidebar for a CSF Leak Facebook group. I requested to join, and whn I did, I found that this issue is much more common than I realized.

A person can have either a cranial or a spinal cerebrospinal fluid leak. In my case, it was cranial, since I was leaking out of my nose. Some cranial leakers will leak out of their ears or eyes as well. The symptoms for both can be similar. Unfortunately, CSF leaks are not very easily diagnosed, and there were many people in the group that had seen many different doctors for years until they were properly diagnosed. Many even traveled out of state to doctors that specialized in leaks. For a CSF leak a patient should see a skull-based ENT, neurotologist, or neurologist to get the proper tests done.

My ENT seemed very knowledgeable about CSF leaks, so I felt very lucky and hopeful. He ordered a CT scan of the sinuses, and after looking at it for a while, he told me that he didn’t see a crack or bone defect, or any obvious indications of a leak sight. But he informed me that he had no doubt that I was leaking cerebrospinal fluid, and that my dura–which is the lining of the skull–was extremely thin and was most likely the source of my leak.

A transmastoid craniotomy was scheduled and performed in November 2019, in which the doctor went in behind my ear and reinforced my dura with synthetic dura and then sealed me up. After surgery I was instructed not to bend, twist, or exert myself in any way. I had to sleep with my head elevated.

I had high hopes that once I healed from this surgery, I would have less headaches and dizziness, and no more runny nose. Unfortunately, this was not my experience. In a later entry, I will go into my experiences post-surgery and SCDS.

Thank you for your support.



More information:

Hopkins Medicine CSF Leak

CSF Leak Association

Facebook Group

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