Asking Doctor about testing for CSF leak

[Knellie]

 Hey everyone!

    I am going to get an appointment with my primary care doc to see if he will test the fluid coming out of my nose to see if it is Cerebrospinal Fluid. I just wanted to see if anyone has any tips on how to ask? We all know that asking doctors to do tests like these can make them angry. I also wanted to know if anyone has ever had this test done before. I think it is called a Pledget study?? I am just worried because I have already been told by two doctors that a CSF leak is so rare I can't possibly have it and that I just have migraines. One of them just told me I had a runny nose, even though I get stuff coming out of my ears sometimes too. I just don't want this to be a waste of my time and money again. Thanks for any tips!!!

[Sarah Tee]

I probably can't word this very well, but I feel that the idea that "you can't have it because it is rare" is not logical when looking at a single patient. All they could say is that it is unlikely, but the only disease you "can't have" would be one that didn't exist!

For instance, I just did a quick check and found a reference that the estimated incidence is 5 in 100,000 (presumably in America). If your symptoms are consistent with a CSF leak, then why can't you be one of those five people?

But, if you don't think your doctor will react well, what about asking to see an ENT specialist about your nasal and ear discharge without mentioning CSF leak?

If you list all the symptoms that point towards a CSF leak without actually saying that term, the ENT specialist might come up with it independently. Or you could fudge things a little and say "Well, my previous doctor did discuss the possibility of a CSF leak with me, what do you think?" – leaving out the fact that the previous doctor said it was impossible!

 

[Knellie]

@Sarah Tee - Thank you for your reply! I did go to an ENT, in fact he was the one who told me that since I haven't had any previous trauma, that I can't possibly have a CSF leak and that it was just a runny nose. I like what you said in the last paragraph though. I may need to find another ENT to see if he/she will be more competent than my last doctor, and then I can play it that way. I just wish I didn't have to walk on eggshells when asking doctors about specific conditions!  

[racingheart77]

I have also suspected that I may have a csf leak. How long have you suspected? I sort of just gave up on doctors so I never ended up getting tested. If you find a good doctor in Washington feel free to let me know!

[TCP]

I only way that I knew that I had a CSF leak was being able to taste salty water in my mouth. I'd had an apoplexy from a pituitary tumour. 

[Pistol]

@Knellie - do you need a referral to see a specialist with your insurance? If not you can just schedule an appointment with an ENT or other specialist for the sole purpose of being tested for CSF leak. If you do need a referral I would make a list of all the symptoms you have that are symptoms of a leak, present them to your PCP to show that there IS a potential for a leak in your case and demand to be tested. For a doctor to refer you there has to be a valid reason - the more symptoms you can present the better the chance of getting referred. There has to be a need to rule it out. The same goes for any testing he may order - he will have to list a symptom or diagnosis that warrants the test in order to get the insurance to approve it.