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Thread: Living With My Ear Leaks

  1. #1

    Default Living With My Ear Leaks

    Hello Folks,

    I have not checked in for a while so thought it was time. My situation in a nutshell is that I have been living with CSF ear leaks (both ears) following a head injury five years ago now. The leaks are apparently small and usually are more like a "seep" than a leak. Anyway, right after my injuries they detected the leaking but apparently the leaks partially healed and although my symptoms continue, they cannot detect the leaks. I occassionally will get a drop or two of fluid from my nose so I think I could get a positive beta-2 test if I put my mind to it. To be honest though, I am finding myself increasingly reluctant to pursue a diagnosis further. If I get diagnosed, then they will try to "fix" me and I am not sure I want to go through that. I live a pretty normal life now and (knock on wood) have not had meningitis in five years. I saw a specialist this past summer who told me there was a 5% "risk" associated with going through head surgery and a 10% "risk" of living with a leak. I did not ask him what the meaning of "risk" was but I am assuming that means mortality rate. Anyway, with my luck, I'd push and push and push to get diagnosed and then would be among the lucky 5% to not make it through the surgery. Don't get me wrong, if I were more symptomatic or had other problems from my leak like some of you do, then there would be no choice but to push for a diagnosis and seek treatment. But, since I get along just fine with my leaks, I think at least for now I am gong to live with them.

    Another reason I am sort of choosing to do nothing is that besides my CSF leaks, I have some concurrent health problems. I am dealing with some type of yet undiagnosed autoimmune disease. It has plagued me for the past ten years. It acts like lupus or scleroderma or something along those lines. I have raynaud's in my hands and feet, a fast heartbeat, heart palpitations, a lot of numbness and muscle spasms, and lowering blood counts. So, I just feel that I have too many health problems to keep track of and trying to fix my small leaks just does not seem like it would accomplish much.

    Maybe my attitude is wrong. Maybe I am supposed to fight more but I am tired of it. So, I am living one day at a time. After all, ultimately - despite our efforts, our futures are dictated mostly by fate.

    All my best...Ed.

  2. #2

    Default

    Hi Ed

    Good to hear an update. I understand not wanting to push anymore. It gets old. I have not pushed anymore either.

    I am convinced I have a leak but my doctors are saying the b2t and cisternogram pledgets were false positives. I also had a low WBC 3 months ago with a physical, but it is now normal. I do believe that when something is wrong with the body it tries to heal itself and does cause other problems. Sorry you have these other issues and I hope someone can figure it out for you.

    Best wishes, Thia

  3. #3

    Default

    Hi Thia,

    Thanks for your response. Yes, I have wondered if the reason my leaks did not heal was due to my underying health problems. Like you say, one problem kind of leads to another sometimes!

    The problem with my blood counts is that all of them (white blood cell, red blood cells, and platelets) have gone down. This obviously is concerning to me but as of yet, they have not declined far enough to warrant a bone marrow biopsy or anything like that...although I feel that is probably in my future if the trend continues.

    One thing you might find interesting Thia, is that the specialist I recently saw told me that there have been studies done that show that with the right amount and type of testing, they can detect small amounts of beta transferrin (CSF) in just about anyone! If this is true, then this would be a reason why in cases like yours where a leak cannot be found, that your doctors will consider it a false positive.

    All my best...Ed.

  4. #4

    Default

    In cases like mine where 2 separate tests say positive, they are just giving up because they don't know what else to do and want me to go away. I understand I am a frustrating case, but someday technology will change and maybe my leak can be found. It is easier for them to just say false positive, instead of we looked and we can't find it. See the next thread I am starting. OT, recent MS study

    Hope your blood counts come back up and you start feeling better soon. Thia

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