CSF leak after tethered cord surgery in hypermobile EDS?

Hi all! I have hypermobile EDS which as I’m sure many of you already know often goes hand in hand with tethered cord. I know people have life changing results from tethered cord surgery and that is amazing! But I feel obligated to share my experience with tethered cord surgery as it gave me a CSF leak and has caused me to be disabled for over a year and a half now. My surgeon gaslit me and refused to admit I may have a leak, but my recent imaging done by my new doctors finally confirmed my suspicions and showed a leak at the surgical site. I don’t want to scare people away from getting the surgery, everyone has to make the right decisions for themselves and their individual health. Just want to share in case anyone finds themselves in a similar situation after surgery so that they can identify the complication sooner.

After having multiple endovascular embolizations of my CSF venous fistulas that only provided temporary relief of my CSF leak symptoms, my doctors wanted to do a digital subtraction myelogram to make sure they weren’t missing anything. So I had that done and turns out there IS a CSF leak at the site of my tethered cord surgery! My original surgeon completely brushed off that there was even a small possibility that I had a post operative CSF leak. It was actually a really traumatic experience full of medical gaslighting, until finding my current team of doctors who are awesome.

All of this to say, if you are having CSF leak symptoms after tethered cord surgery PLEASE see a doctor that specializes in CSF leaks. My original surgeon did not want to admit to a surgical complication, and on top of that she seemed to have shockingly little knowledge about leaks. I was told that because it didn’t show up on MRI, I don’t have a leak. But Brain MRIs for leaks are negative 20% of the time, and nearly half of all spinal imaging misses leaks. I was also told if a blood patch didn’t permanently cure my symptoms then it’s not a leak, which is also not true. Temporary symptom improvement with a blood patch is actually a diagnostic indicator of a CSF leak. And of course, having EDS or a connective tissue disorder also increases the risk of developing a leak!

Just wanted to share as I feel that the tethered cord surgery was presented to me as a super low risk procedure, when it has made me disabled and unable to work in over a year. If the doctors just disregarded my surgical complication so easily, then who knows how many other people have had similar experiences to me? The surgeon had told me that worst case scenario my tethered cord symptoms stop progressing, and best case scenario they improve after surgery. Obviously that’s isn’t the case given what has happened to me.

I know there are people that have had great success with tethered cord surgery and I am so happy for them!! I just wanted to share my story to raise awareness about the potential risks of this surgery, which in my case the surgeon refused to address because she did not believe me. I ultimately had to seek care elsewhere with doctors that did believe me.