PainInTheNeck
12-08-2006, 02:26 PM
I received this email from Ed and he asked that I post it for him.
About 7 weeks ago I sustained a sports-related closed head injury and a basilar skull fracture (actually more than one fracture). Anyway, all my injuries are healing up except that my ears are bothering me terribly. When in the hospital they did a CT-scan which showed fluid in my mastoids and my middle ears. My ears now feel as though they are full of fluid much of the time and it is not getting any better. The feeling varies from minimal to terrible. It is very obviously fluid and sometimes it gets real bad and then I can feel it draining down the back of my throat. I am just about convinced it is CSF drainage. I know having bilateral leaking into the ears would be rare - but apparently it is not impossible. None of the physicians I have seen yet really think this could be a CSF leak because I do not have the classic dripping from my nose (although at times I will get one or two drips that come down my nose but it is never enough to collect for the Beta Transferrin test). Also (Murphy's Law) whenever I do go into the doctor my ears are on their good behaviour and so they do not see any fluid in them at that time.
The physicians I have seen have also said that even if it is a leak, it must be small and therefore we should just give it time to heal. They have also suggested that the chances of meningitis are small with a small leak. But everything I read on the internet suggests otherwise. I cannot find one place where it says to wait more than three weeks or so before having surgery due to the threat for meningitis. And I cannot find any place where it says a small leak deserves any less attention than a large one.
So, until I am able to obtain approval of my message board registration (which seems to be taking forever), I am hoping that you kind folks could answer a few questions for me:
1) Does it sound reasonble that a "small" leak would carry less of a risk for meningitis than a larger leak?
2) Does it sound reasonable to "sit on" a small leak for months hoping that it will heal?
3) I do not live in a large City although I am not in a "hick-town" either but I wonder how much experience our doctors have with CSF leaks. My neurosurgeon talks like he is familiar with large, obvious, traumatic leaks but when I start questioning him about smaller leaks he is more vague. So, do I need to travel somewhere to seek out a CSF leak specialist?
4) For those of you with persistent cranial CSF leaks, have you had problems with meningitis? Are there things you can do to protect yourself or minimize the risk? I am scared stiff about the possibility for meningitis.
5) I cannot get recongnition of this problem by the doctors because I cannot prove I have a leak. Has there been anyone else who has had difficulty in getting a diagnosis because you have not been able to collect enough fluid for the test?
6) I will probably have a million more questions but I'd appreciate any thoughts you have on my above questions and any advice generally on my situation. I would also like to know more about all of you - particualrly those of you with cranial CSF leaks.
I really want to thank the folks here who helped me out after I could not get my activation approved for the message board. I especially want to thank Shelly as she has taken steps to try to get my registration approved and she agreed to post this message for me. I have registered (twice now) but cannot seem to obtain my approval e-mail so I can post messages. Has this happened to anyone else? I wonder how many others are "out there" who cannot get in.
Thank you so much for your help and I look forward to talking to you more. By the way, I am a 40-something year old male, happily married, and one of my big interests was raquetball (although that is how I was injured so I am not real eager to get back on the court anytime soon!).
Sincerely....Ed.
About 7 weeks ago I sustained a sports-related closed head injury and a basilar skull fracture (actually more than one fracture). Anyway, all my injuries are healing up except that my ears are bothering me terribly. When in the hospital they did a CT-scan which showed fluid in my mastoids and my middle ears. My ears now feel as though they are full of fluid much of the time and it is not getting any better. The feeling varies from minimal to terrible. It is very obviously fluid and sometimes it gets real bad and then I can feel it draining down the back of my throat. I am just about convinced it is CSF drainage. I know having bilateral leaking into the ears would be rare - but apparently it is not impossible. None of the physicians I have seen yet really think this could be a CSF leak because I do not have the classic dripping from my nose (although at times I will get one or two drips that come down my nose but it is never enough to collect for the Beta Transferrin test). Also (Murphy's Law) whenever I do go into the doctor my ears are on their good behaviour and so they do not see any fluid in them at that time.
The physicians I have seen have also said that even if it is a leak, it must be small and therefore we should just give it time to heal. They have also suggested that the chances of meningitis are small with a small leak. But everything I read on the internet suggests otherwise. I cannot find one place where it says to wait more than three weeks or so before having surgery due to the threat for meningitis. And I cannot find any place where it says a small leak deserves any less attention than a large one.
So, until I am able to obtain approval of my message board registration (which seems to be taking forever), I am hoping that you kind folks could answer a few questions for me:
1) Does it sound reasonble that a "small" leak would carry less of a risk for meningitis than a larger leak?
2) Does it sound reasonable to "sit on" a small leak for months hoping that it will heal?
3) I do not live in a large City although I am not in a "hick-town" either but I wonder how much experience our doctors have with CSF leaks. My neurosurgeon talks like he is familiar with large, obvious, traumatic leaks but when I start questioning him about smaller leaks he is more vague. So, do I need to travel somewhere to seek out a CSF leak specialist?
4) For those of you with persistent cranial CSF leaks, have you had problems with meningitis? Are there things you can do to protect yourself or minimize the risk? I am scared stiff about the possibility for meningitis.
5) I cannot get recongnition of this problem by the doctors because I cannot prove I have a leak. Has there been anyone else who has had difficulty in getting a diagnosis because you have not been able to collect enough fluid for the test?
6) I will probably have a million more questions but I'd appreciate any thoughts you have on my above questions and any advice generally on my situation. I would also like to know more about all of you - particualrly those of you with cranial CSF leaks.
I really want to thank the folks here who helped me out after I could not get my activation approved for the message board. I especially want to thank Shelly as she has taken steps to try to get my registration approved and she agreed to post this message for me. I have registered (twice now) but cannot seem to obtain my approval e-mail so I can post messages. Has this happened to anyone else? I wonder how many others are "out there" who cannot get in.
Thank you so much for your help and I look forward to talking to you more. By the way, I am a 40-something year old male, happily married, and one of my big interests was raquetball (although that is how I was injured so I am not real eager to get back on the court anytime soon!).
Sincerely....Ed.