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Cerebrospinal Fluid Leak: How Were You Diagnosed?

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Patti recalls how she was finally diagnosed with a cerebrospinal fluid leak (CFL) and describes how a friend advocated for her health.

As time went on with my hospital stay I mentioned several times that I was having fluid just out of one side of my nose, leaking, you know, running out, and requested clean excess and things and mentioned it to all the doctors, even the nurses because I felt like they could give me something maybe, since I was in a hospital, to stop the allergies.

And then I had a friend who called me and wanted to know how I was doing. She had heard I was in the hospital and I said, “You know, I am just not doing well. I’ve got this meningitis again and it’s just a mystery. They all act like, you know, it’s just something very odd that I have and nobody seems to be able to say I won’t get it again. I may just have this for the rest of my life; be prone to meningitis.”

So this friend called another friend of mine, a good friend of mine. She came over to the hospital and she said, “Just tell me what’s wrong? Tell me how this all happened? Just tell me from the beginning.”

So as I am sharing here, I told her and we came to a point in the conversation that I told her I just, I really just couldn’t go on. I could not go through this again. It was just too much for me and she was very compassionate and she said, “You know, we are going to find out. We will find out why this is going on. We will find out what’s wrong with you.”

So then my husband came in and we’re talking to a surgeon that’s there – a neurosurgeon, and he said, “I think there’s a leak,” and my husband right away said, “A leak? Well, what do you mean?” And he said, “Well, she might have a leak, a spinal fluid leak,” and my friend Michelle said, “Where would the leak be?” And she said to the surgeon, “Well you know she has spinal bacterial meningitis,” and this surgeon said, “Oh no, I didn’t know that. I didn’t read the chart.”

So, we were just all kind of amazed at that point that number one, he hadn’t read the chart and number two, that he admitted that. And so then my friend Michelle made a call to a neurosurgeon friend of hers who originally had done some surgery on my husband so the name was familiar, but she called him and he asked some of the symptoms that I was having and wanted me brought over to Barrows Neurological immediately. In fact, he wanted me over there so quickly he kept calling to see why I hadn’t been released and why I wasn’t on my way, being ambulatory over to the hospital.

This is when I knew that, when I really thought about the point how important it is that you have somebody to advocate for you. My family, my husband, my family was not able to do that. They just stood by and didn’t know what to do. They were very concerned that I was so ill and they knew that it was very serious. And think they knew it was serious but they just didn’t know how to get things accomplished. They didn’t know where to turn or who to go to.

And so, when Michelle came on the scene and told me that I was going to be fine and that she was going to get me the help that I needed it was really tough because I knew that going over to Barrows and having, who was going to see me, take care of me, I knew that there was going to be surgery and I knew that it was going to be in the brain because there had been mention of that, and I knew that I might not be okay – I knew that.

I knew that because of things that were going on within the conversations and how people were behaving, but what was so reassuring for me when I was going through all of this and I was taken over to Barrows was that the level of care was such that I felt reassured, and because I had Michelle advocating for me it was kind of, I had a weight lifted if you can understand that.

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