CSF Leak in spine

Hi @mikaylar, While we wait for members to join and share their experience with CSF leaks in the spine I thought I would share these two newsfeed posts that discuss CSF leaks.

--- Medical inspiration from an old book: https://connect.mayoclinic.org/blog/radiology-insights/newsfeed-post/medical-inspiration-from-an-old-book/
--- Head and Neck Concerns in EDS/HSD: https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/head-and-neck-concerns-in-edshsd/

Do you have a CSF spinal leak?

I have had 5 blood patches with glue but no dye. This next one will pinpoint if there is a leak. I have had a daily persistent headache for 4 years every day/all day. None of the blood patches worked. Thanks for the info.

I am having a DSM (mylography) Thursday in which they place dye in my spine to determine if there is a CSF leak. I have had a daily headache for 4 years all day/every day. Has anyone ever had this? I need to do it 2x, a week apart.

I had a dynamic ct myelogram to pinpoint the exact location of a large leak that was seen on mri in the thoracic area.
The ct myelogram and DSM are fairly similar. Some doctors choose one over the other for some reason.
Mine was done at Mayo/Rochester

Wow! How did docs treat it? I'm scared. Did you have headaches?

My leak was so big, it had to be surgically repaired. Three lamenectomies, a discectomy and dural repair.
I had terrible headaches and neck pain as well as some spinal pain.
Best of luck on your testing. Take it easy afterwards for a few days, no lifting, bending or twisting. You may be a little sore but shouldn’t be bad.

Thanks for the info. I do 2x (this Thurs and next) for the spinal taps. I'll be asleep, thank God. What lead up to your getting this done? I have had a headache for 4 years unrelenting. I had 5 blood patches with no relief. Are you okay now?

Many years of headaches, neck pain and some spine pain. I had lost so much spinal fluid that my brain was sagging and crushing my pituitary gland. I began to have trouble regulating my temperature and blood pressure as well as being dizzy a lot and just generally ill. It’s been almost three years since my repair surgery and I haven’t been able to have a full checkup because of my insurance. I just went on Medicare in July so I can now go anywhere I need to!!! I finally get to go back to Mayo next month for a good checkup. I’m having some head and neck pain again and hoping that I haven’t sprung another leak!

Wow, you certainly have been through the mill. I wish you luck. Keep us posted.

Hello I had spinal surgery 8 yrs ago and 7 yrs ago I started getting intense headaches. I have been trying multiple treatments to help from Botox to nerve block to numerous meds and now my doctor has recommended that I have CSF testing for various leakage which is confirmed. Going to Mayo to have mylogram but I have AS which makes it difficult for the needle to penetrate the spine. I tried to get a test done at Yale but unsuccessful. Hopefully Mayo can . I’m nervous about the test. Headaches are daily now level 10 at times so looking forward to patching it. If they can do it is it temporary or is it permanent