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CSF leak, waitlist, myelogram-yes or no?
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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@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.
@morkat I have already made an appointment. They made an appointment with a neurologist that is affiliated with the csf specialty clinic. I told them I would be flying from out of state. I did call 2 other times to confirm this neurologist could see to it I have test scheduled if she suspected a csf tear with my symptoms. They confirmed. I did tell them I am a self referral and that was ok. My insurance company does not require a referral.