Surgical Issues for EDS and Hypermobility Disorders

I have had issues with surgeries and wound healing and just recently had cervical spine surgery. My incision is very sensitive and gets easily irritated. It burns, has some discharge, is red/swollen, itches, etc. I went to the emergency room the other day because I was concerned the incision is infected and didn’t want to ignore the potential of it to turn into sepsis. My surgeon will look at it this week at my 6 week follow-up appointment.

With my hypermobility, I have been hurt during surgery where positioning me before/during and after has caused some joint pain and/or bruising (have had 6 surgeries in 4 years). During physical therapy, I have been hurt when the therapist moves my joint (leg for example) in a way that extends it beyond a point and I cannot resist the movement so it injures the soft tissues (in this case, it was my bilateral gluteal tendinopathy and bilateral hamstring partial high grade tears plus cervical myelopathy spinal cord injury/weakness/numbness that also contributed).

My degenerative disc disease in my spine is most likely due to hypermobility and autoimmune issues.

It is definitely good to talk to your care team before surgery to let them know if you have issues with hypermobility of joints and wound/tissue healing.

Thank you for describing the issues that you have encountered. The information was helpful. to me as I plan for upcoming surgery. I am sorry that they happened to you and hope you are healing.

Askwhy

My total hip replacement has now dislocated three times in less than 18 months. I do not feel stable with this prosthetic. I need to have the surgery redone but am terribly concerned. I cannot find as orthopedic surgeon who knows about hypermobility syndromes.

@lisamelanie Sorry to hear about your results. My left hip was replaced in Oct. Very experienced surgeon who ck'd joint after placement. It was "globally unstable" dislocating in every direction. He did an immediate revision using longer, wider hardware to create enough tension/pressure to keep hip from dislocating. Post-op challenges with leg surgically longer, and slow recovery of function. Cannot climb stairs @ 14 weeks but hip is stable! Last week he checked status. Range of motion on new hip his comment was "Ridiculously insane" hypermobility. I TOLD HIM MANY TIMES I WAS VERY FLEXIBLE. Scheduled for rt hip replacement in 3 weeks. Next day my therapist offered the idea I might have EDS. Just sent Dr a msg Friday. New journey for me. Find the best surgeon you can for eval. Good luck!

Thanks so much for your reply. My hip dislocated again which was the fourth time it’s dislocated in the last 3 months.
I have a surgical revision scheduled for February 10th. I’m actually scared a bit.
I’m glad you found a surgeon with whom you were comfortable. Thanks for telling me your story. I hope you have nothing but good progress ahead of you.
I may try to get the name of your surgeon, if the revision of my hip replacement is not successful. Thanks again

My long long journey of chronic pain with this final diagnosis of hEDS - which is some that finally makes since. I have been diagnosed with many other things that didn’t fit! But at my PC appointment the other day my Doc said I was in u charted territory! This is this first time I’ve seen Elhers Danlos on Mayo! I am very happy to see it- albeit the post really scare me.

@lisamelanie What a painful nightmare. My surgeon is in Colorado- Fort Collins/Loveland. He's performed over 9,000 anterior hips. He absolutely has a different perspective of my situation going into this next surgery. Hope your revision helps! Make SURE to ask about leg length when surgery is done. My surgeon waited until first post-op 2 weeks later to measure the discrepancy from pre and post surgery x-rays. Gave me lifts for inside of shoe of short leg [they come in different heights]. Lifts do help a bit but aren't a long-term solution. He's saying he'll make legs the same length with second hip.
BTW after surgery, before first appt, I found 2 different shoes [thick sole and thin sole] to attempt to balance lengths. Good luck with your surgery. Prayers & hugs.

@ptweldin , thank you so very much! I will absolutely ask about leg length. I also really appreciate your mentioning appropriate shoes. I’m having difficulty seeing beyond the surgery but your advice and support is so kind and meaningful.
Hope you are doing well with your hip. Thanks again!

@lisamelanie
I'm struggling emotionally and physically with my non-operated hip. Was not ever expecting to ever have to replace my "good hip" but pain has gotten quite bad. Surgery in 3 weeks on Feb 25th. Both hips will be 4 months apart. Feeling a bit more prepared for what to expect after surgery this time.