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CSF leak, waitlist, myelogram-yes or no?

Posted by cholloway @cholloway, Dec 31, 2024

Hello all. My husband has had a CSF leak since April 2024 and we think it was caused by a scuba diving incident and his pain pump removal. We have been on the waitlist for the CSF clinic at Mayo since October. We had to rule out ENT, neurology, and other possibilities. He had two spots show up on his brain MRI that are indicative of a CSF leak but there is only one doctor that knows about these and wants to do a myelogram. Should we wait for Mayo to do the myelogram or should we have his doctor do it?

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morkat | @morkat | 1 day ago
In reply to @melindaward "@cholloway hi I am self referred patient for an evaluation. I am in hopes the neurologists..." + (show)
Profile picture for melindaward @melindaward

@cholloway hi I am self referred patient for an evaluation. I am in hopes the neurologists will confirm my suspicions of a csf leak. I have gone through every treatment for chronic migraines including an occipital neuralgia surgery. I have only gotten worse. I am now confined to bed. I will be flying to Jacksonville fl for this with no records or Dr referral . What do you think my chances will be?

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@melindaward
Not optimal, it is better to bring recent tests with you. He needs information to understand what you have had done. Do you have an appointment? Most gifted doctors have a waiting list, sometimes it takes a month or two to get on their calendars. I know your frustration but, if you want a good outcome make sure that you will be seen, or else it is a wasted trip. Ask what you should bring and will you be seen. Get on his calendar and go prepared, I think you will have a better outcome.

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