Ehlers-Danlos Syndrome and hip replacement complications

Ross A. Hauser, MD.

Patients with hypermobile Ehlers-Danlos Syndrome (hEDS) can have successful hip replacement surgery. Hip replacement surgical outcomes in Ehlers-Danlos Syndrome patients can also be very challenging. We do see many patients with what they would consider a hip replacement surgery. They are at our center because while the hip replacement addressed the degenerative problems of the ball and socket, they still have the ligament laxity type instability of their hypermobile Ehlers-Danlos Syndrome.

We also see the patient who has a long history of hip surgeries, ultimately hip replacement and revision hip replacement. The problem here is that while the hardware can help with pain and function in the ball joint, the hardware does not correct the inherent laxity causing hip hypermobility. It is the hip hypermobility that can cause unnatural wear and tear on the hip replacement and cause wearing away of the hardware.

Discussion points of this article:

My hips are better but. . .Pain reduced after surgery, still a dislocation risk.
Research: Patients with EDS have a significant improvement in pain after hip replacement. These patients also have a high dislocation rate after surgery.
Loose ligaments are made looser by replacement surgery.
The main points in regard that Ehlers-Danlos Syndrome is a problem with type 3 and type 5 collagen as it relates to ligament laxity and treatment.
Prolotherapy treatment to address post-surgical ligament laxity.

My hips are better but. . .Pain reduced after surgery, still a dislocation risk

People who have hip replacements without a clear, or any diagnosis of hypermobile Ehlers-Danlos Syndrome can continue to have post hip replacement complications because they continue to tear the surviving hip ligaments.

Patients will tell stories that go something like this:

Pain reduced after surgery, still a dislocation risk

I was diagnosed with Hypermobile Ehlers Danlos-Syndrome after constant dislocations of primarily of my hips and shoulders. I had to have hip replacement surgery because I could no longer tolerate the pain of walking. The surgery helped a lot but I was told that there was the possibility that my hips may dislocate again because of the joint instability and hypermobility.

Many surgeries

Years ago I was advised by my doctors that I would need many operations over the years and that it would eventually lead to hip replacements. As I was in my mid 20’s at the time, the doctors wanted to delay the hip replacements as long as they could with a series of arthroscopic surgeries. I did eventually reach the point of hip replacement and the surgery reduced almost all my pain. But I am told that revision surgery should be prepared for in the future as the hypermobility in my hip may accelerate the wear and tear on the hardware.

Research: Patients with EDS have a significant improvement in pain after hip replacement. These patients also have a high dislocation rate after surgery

Let’s start our look at the research with a December 2021 study in The Journal of the American Academy of Orthopaedic Surgeons. (1) In this study, the authors identified that patients with EDS had markedly higher rates of periprosthetic dislocation within 90 days of surgery. Further, patients with EDS continued to have increased odds of dislocation in the 90-day postoperative period. So how much higher?

After 5 years 7.3% of EDS patients had dislocation of the hip replacement and other complications vs 3.9% of the regular population. The authors then concluded “compared with patients without EDS, patients with EDS were found to have a higher rate of perioperative dislocation and markedly lower implant survival at 5 years. These findings are consistent with the increased connective tissue laxity associated with EDS.”

We are going to look at a September 2020 paper published in the journal Arthroplasty Today (2) by doctors at the Mayo Clinic.

Here the researchers discussed the controversy as to whether or not patients with hypermobile Ehlers-Danlos Syndrome or Ehlers-Danlos Syndrome should have hip replacement because of the high complication rate. Our comment here is that for someone, like the examples we gave above, who can no longer walk because of pain or have a very low quality of life, many will take their chances on the hip replacement and then deal with the hip joint laxity later.

In this paper, the authors noted a study (3) that found significantly improved scores postoperatively compared with preoperative values in patients with EDS undergoing hip replacement for femoroacetabular impingement pain and capsular laxity. However, they also noted research (4) that suggested that hip replacement be generally recommended because of high complication rates. It should be pointed out that the recommendation against hip replacement was published in 1993. However many papers including the one from the Mayo Clinic consider these findings still relevant.

In their examination, the Mayo doctors suggested that “patients with EDS can expect to obtain significant improvement after (hip replacement) surgery. However it should be understood that “higher rates of postoperative complications, including wound infections, have been noted after surgery in the patient population with EDS.” However the doctors did declare that they “were unable to find a significant difference in the postoperative complication rates between the patients with EDS and (people who did not have EDS and had a hip replacement).

Higher dislocation rate in the patients with EDS

They also noted interest: no patients in the EDS group developed postoperative wound complications or infections. They did observe however a relatively higher dislocation rate in the patients with EDS (15.4%) than in the controls (5.1%), although this was not statistically significant.

What was the suggestion of this paper?

Given the relatively high dislocation rate observed in the patients with EDS, it may be worthwhile for the surgeon to consider alternate approaches and newer technology to hip replacement.
The leg-length discrepancy is a concern after hip replacement, especially in patients with lax soft tissues. Although they did not observe postoperative leg-length discrepancies in their group of patients with EDS, this concern exists and surgeons should be especially mindful of overlengthening in these patients during the procedure.

An overall message of this paper: “The characteristics of hypermobility and laxity in patients with EDS must be accounted for when planning to perform a total hip replacement, which relies on the soft tissues for stability. ”

Loose ligaments made looser by the replacement surgery

According to researchers, and our own clinical observations spanning now nearly three decades, it is somewhat inherent of a hip replacement surgery that ligaments that are already loose, whether from hEDS or the laxity created by wear and tear, are made looser after surgery.

A study in The Journal of Bone and Joint Surgery. American Volume (5) explains:

“Following total hip replacement, the capsular ligaments were unable to wrap around the reduced-diameter femoral head to restrain extreme range of motion. The posterior capsule was the most affected, indicating that native posterior capsule preservation is not advantageous, at least in the short term. Insufficient neck length could cause capsular dysfunction even if native ligament anatomy is preserved, while increased neck length could overtighten the anterior capsule. Increased understanding of soft-tissue balancing following total hip replacement could help to prevent instability and improve early function.”

The above study was not conducted in hEDS patients. It was a cadaver study. Yet the evidence is given of ligaments made looser or more lax and ineffective after hip replacement causing further instability. Further instability can be seen as a major complication in all patients and especially in the hEDS patient.

In this video, Ross Hauser, MD discusses Ehlers-Danlos Syndrome and ligament laxity. Explanatory notes and a summary is provided below the video.

The main points in regard that Ehlers-Danlos Syndrome is a problem with type 3 and type 5 collagen as it relates to ligament laxity and treatment

Ehlers-Danlos Syndrome pain can be caused by joint instability from ligament laxity. So I look at Ehlers-Danlos Syndrome as a genetic progressive destructive ligament problem and base treatment on that.
In 99% of EDS patients, they display normal genetics meaning that Ehlers-Danlos Syndrome is a problem with type 3 and type 5 collagen. This means that the type 1 collagen that gives strength to the ligaments is not the main factor in joint stability. If you have the genetic mutation of type 1 collagen that conditions called osteogenesis imperfecta.
It is true that 5 to 9% of ligaments are made up of type 3 collagen which can be defective in Ehlers-Danlos Syndrome but what gives the strength to the ligaments that hold the joints together is the type 1 collagen and genetically Ehlers-Danlos Syndrome patients have normal genetics as it relates to type 1 collagen so that’s why we see these patients heal well with Prolotherapy

Prolotherapy treatment to address post-surgical ligament laxity

In this section, we will lay the foundation for the treatment of patients suffering from Ehlers-Danlos Syndromes, specifically hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders with Prolotherapy injections. The treatment is designed to stimulate connective tissue growth and rebuilding in damaged painful joints where there is collagen deficiency.

Prolotherapy is an in-office injection treatment that research and medical studies have shown to be an effective, trustworthy, reliable alternative to surgical and non-effective conservative care treatments. In our opinion, based on extensive research and clinical results, Prolotherapy can be beneficial in patients with hypermobile Ehlers-Danlos Syndrome.

Our research Prolotherapy and Ehlers-Danlos Syndrome (hEDS) and Joint Hypermobility Syndrome (Hypermobility Spectrum Disorders (HSD)).

The full research can be downloaded as a PDF file – Treatment of Joint Hypermobility Syndrome, Including Ehlers-Danlos Syndrome, with Hackett-Hemwall Prolotherapy.

Here are our bullet points:

While traditional medical treatments including education and lifestyle advice, behavior modification, physiotherapy, taping and bracing, exercise prescription, functional rehabilitation, and pain medications offer some symptomatic control, they do little in regard to curbing the progressive debilitating nature of Hypermobile Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome.
Excessive joint mobility with its subsequent joint degeneration and multiple joint dislocations can then lead the individual to seek out surgical intervention, which has suboptimal results in the hypermobile patient population versus the normal population. As such, some patients with Ehlers-Danlos Syndrome (hEDS) and Joint Hypermobility Syndrome (HSD) are seeking alternative treatments for their pain, including Prolotherapy.
Prolotherapy can offer benefits for those with symptoms from generalized hypermobility because it is designed to successfully treat the ligament and tissue laxity that accompanies Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome.
Prolotherapy works by initiating a brief inflammatory response, which causes a reparative cascade to generate new collagen and extracellular matrix giving connective tissue strength and the ability to handle strain and force.
Prolotherapy has a long history of success in treating ligament injuries, including patients with joint hypermobility.
Studies on Prolotherapy have shown that it eliminates chronic pain even in those patients who have been told by their medical doctor(s) that surgery was the only treatment option for their pain.

Some of the rationales for using Prolotherapy for patients with Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome include that it has:

a high safety record is comprehensive (all or most joints can be treated at each visit),
is an outpatient procedure,
is cost-effective (compared to surgery),
pain relief is often quick,
and it provides joint stabilization.

Perhaps its greatest asset is the fact that this one treatment modality can handle most of the painful musculoskeletal conditions that occur in individuals with Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome.

The strength of hip ligaments is your ability to hold your hip together

Hip ligament strength and laxity are obviously a concern in hEDS. An editorial written in August 2020 in the medical journal Arthroscopy (6) wrote: “Hip instability continues to be a challenge in hip preservation. Our understanding of the role of osseous anatomy, labral integrity, and soft-tissue stabilizers has increased dramatically over the past several decades. Connective-tissue disorders such as Ehlers-Danlos Syndrome pose a significant challenge to the management of instability in all joints but particularly in the hip. Ligamentum teres tears have been found to be more common than previously thought, although their significance is still not well understood. In patients with both Ehlers-Danlos Syndrome and ligamentum teres tears, reconstruction, and capsular plication result in moderate success, but not in all cases.”

How do I know if I’m a good candidate for treatment?

Just like you, we want to make sure you are a good fit for our clinics ahead of your appointment. We value your time and we also schedule a lot of time with our providers and team to accommodate your visit. Most of the EDS patients who require our specialists’ care travel quite a distance from out of the state/US, but even if you are located within a couple of hours from our clinics, we want to make sure you are a good fit for us first. Give as much detail as you wish to share to help our team determine if you are potentially a good Prolotherapy candidate. You can upload MRI reports or other imaging reports if they are relevant to your current case.

Please visit this page Your First Ehlers-Danlos Syndrome/ Full-body Hypermobility Specialist Visit.

Other articles on Hypermobile Ehlers-Danlos Syndrome and joint replacement

References

1 Moore HG, Burroughs PJ, Rubin LE, Frumberg DB, Sculco PK, Grauer JN. Patients With Ehlers-Danlos Syndromes Experience Higher Rates of Prosthetic Dislocation After Total Hip Arthroplasty and Worse Implant Survival at 5 Years. JAAOS-Journal of the American Academy of Orthopaedic Surgeons. 2021 Dec 29:10-5435. [Google Scholar]
2 Guier C, Shi G, Ledford C, Taunton M, Heckman M, Wilke B. Primary Total Hip Arthroplasty in Patients With Ehlers-Danlos Syndrome: A Retrospective Matched-Cohort Study. Arthroplasty Today. 2020 Sep 1;6(3):386-9. [Google Scholar]
3 Larson CM, Stone RM, Grossi EF, Giveans MR, Cornelsen GD. Ehlers-Danlos syndrome: arthroscopic management for extreme soft-tissue hip instability. Arthroscopy: The Journal of Arthroscopic & Related Surgery. 2015 Dec 1;31(12):2287-94. [Google Scholar]
4 Ainsworth SR, Aulicino PL. A survey of patients with Ehlers-Danlos syndrome. Clinical orthopaedics and related research. 1993 Jan 1(286):250-6. [Google Scholar]
5 van Arkel RJ, Ng KG, Muirhead-Allwood SK, Jeffers JR. Capsular ligament function after total hip arthroplasty. The Journal of bone and joint surgery. American volume. 2018 Jul 18;100(14):e94. [Google Scholar]
6 Hunt SA. Editorial Commentary: “Loose Lips Sink Ships”–But What About “Loose Hips”? [Google Scholar]

This page was updated January 9, 2022