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CSF Leak in spine

Posted by mikaylar @mikaylar, Jun 27, 2023

Has anyone had a CSF leak in the spine and how was it treated? What are your symptoms?

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mikaylar | @mikaylar | Feb 29 8:20am
In reply to @mikaylar "I am having a DSM (mylography) Thursday in which they place dye in my spine to..." + (show)
@mikaylar

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.

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I had 6 blood patches for CSF leak. The last one was a DSM that included dye 2x, then the mylogram. It's not really that bad, but you must be awake so you can help them. I didn't have a leak. 1 in 100,000 will. Good luck.

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Feb 29 10:58am
In reply to @gjcurto203 "Hello I had spinal surgery 8 yrs ago and 7 yrs ago I started getting intense..." + (show)
@gjcurto203

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

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@gjcurto203 Hello. I just wanted to welcome you to Connect. I am a Mayo spine surgery patient, and what helps me a lot is my physical therapist who has done a lot of Myofascial Release to loosen the scar tissue and overly tight muscles. You could ask about that when you are at Mayo as I have seen they have a couple chiropractors on staff in their rehab departments who do Myofascial Release. I don't know if this can help Ankylosing Spondylitis, but it can help pain that is caused by muscles with too much tension.

Here is our discussion on Myofascial Release:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

There is a provider search at http://mfrtherapists.com/

Jennifer

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