Experiences of completed surgery for those with Ehler-Danlos

Hi there,
I have hypermobile Ehler-Danlos and Eagle syndrome. My doctor says I need surgery, but it hesitant because of my hEDs. He states that I could have permanent pain from having surgery. I would appreciate anyone who has had surgery and EDS to share their experiences with symptoms and pain post surgery. This information will help me to plan my next steps. Thank you so much.



@Snapple2020 has had surgery & has EDS, so you could look up some of her posts using the search function, here’s one though:
New. Scared. Welcome advice (maybe a little comfort?) - General - Living with Eagle
There have been quite a few discussions about EDS as well if you want to use the search function for that.
I think if I remember right @Snapple2020 had the most trouble with her jaw after surgery as obviously the mouth has to be opened wide for intubation, and some doctors partially dislocate it to get better access to the styloids.
Hopefully others can give you advice!

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HI there,
I have EDS and had ES surgery in 2020. My question is whom is performing the ES surgery? How much does he/she know about EDS?
2. Have you had other surgeries before? Any problems.

I would want to know why he would think you could have permanent pain? In the hands of the right surgeon, I would question the permanent pain part.

Id want to know if you have any vascular compression and the reason behind wanting to do the ES surgery?

Prior to ES surgery, I already had years of chronic neck pain (did prolo therapy) and TMJ. I was in a particularly bad flair of TMJ issues when I had my first flair. I was having excoriating pain from below ear up into temple areas. I do have severe osteoarthritis in my jaws. After surgery on that side, I had alot of first bite issues but they seemed to resolved pretty quickly. The other side was about 9 months later and I had little issues with the jaw. I think if the jaw or area highly inflamed, pain issues could arise. I wished I had perhaps gotten it calmed down prior to surgery to minimize it.

I already knew going into ES surgery, that it might not help with my pain in neck and ear. The right side started having shooting nerve pain that started in middle of neck and traveled to ear. Overall the ES surgery did not help and I wished I had had an ES surgeon who also evaluated vascular compression.

3 years after ES surgery , not much resolution and traveling to East Coast to see specialist, he felt I had a nerve compression in neck and specified the nerve. This is what led me to diagnose ES 5 years after the shooting pain started. The Sport & Spine person I am seeing at first ignored this consult however just weeks ago, while doing ultrasound guided hydrodissection, she did in fact see evidence of this compression as it wraps around the sterno-mastoid ligament. Hydrodissection is a way to use high pressure saline thru needed to help break up adhesions. Jury is out as to whether this procedure has helped with the nerve compression.

I have a long history of nerve compression issues, many caused by scar tissue formed due to EDS ligament. My Hand EDS specialist feels like we have “soft” nerves. I think he is on to something.

I can say that 3 years after ES surgery, I still have numbness and swelling in my neck from surgery. Not any pain directly from the surgery itself. I had external approach. feel free to ask any questions


I’m sorry your ES surgeries haven’t helped you much, & you’re having to seek subsequent medical care, @Snapple2020. Agreed that those surgeries were a learning experience, but I’m glad that you’re finding other doctors who are more aware of the problems hEDS can cause & are working with you to try to alleviate your symptoms from those. Have you had any testing done to see if you have vascular, IJV in particular, compression?


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I have hEDS. This is quite common in our population. My first question is who is the surgeon performing this surgery and how much experience does he have with these surgeries? The top surgeons I have seen have all remarked on how this is seen often in the EDS/hEDS population. I would be sure you are seeing a highly qualified surgeon and have gotten other opinions and done your homework. I would also speak to your Dr who is managing your EDS.