Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Spine Health Support Group.
Connect
Wait. Get a doctor perhaps a PCP or the neurologist to recommend your case to Mayo.
Do the myelogram. It will tell if he, in fact, has a leak. I had them on my spine several times. First they said it was a leak, then another doctor said no. Move forward and do this. Good luck. What are your symptoms? Mine are constant headache and dizziness.
My husband has dizziness, nausea, vomiting, headache pressure, cognitive issues similar to dementia symptoms. He forgets where he is or gets very confused.
Did you get seen yet? I am also on the wait list for a possible leak and have been since April of 2024. Symptoms for about 4 years, however. Curious if the wait list is moving!
@jandhmorales
WOW!! Did you get seen yet? I’m just starting out although I’ve had a confirmed leak for years. I just got an email from Mayo last month telling me that they have gone over all my medical information and I am eligible to be seen. I don’t know if I can wait that long!
Edited to remove.
@jandhmorales yes. We were accepted last year.
@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?
-
Like -
Helpful -
Hug
1 ReactionIs this a spinal CSF leak or CSF leak? Jacksonville, FL will be your best bet but you need to be referred to these clinics. I haven’t heard of many cases where people go there and are automatically seen. Granted, maybe you will be an exception. Praying and I hope you are seen.
I had a neurosurgeon for 21 years, he did everything if not he coordinated the testing. I think that is a better way. Before I started real treatment, he knew everything about my spine. When hospitalized with surgery, he had his own staff work with you. No one else could touch you. When I had seven disks done at a time I appreciated the safety measures he had in place; after 12 hours of surgery and ICU afterwards for a few days I understand why he did this. My outcomes were very good, considering the severity of how much damage I had.