Ehlers-Danlos Syndrome and knee replacement complications

Ross A. Hauser, MD. 

There is not much by way of published research on the problems of knee replacement complications in Ehlers-Danlos Syndrome patients. Below I have listed and summarized the most recent research.

Patients with Ehlers-Danlos Syndrome can have successful knee replacement surgery. However, for some, recovery and complications from knee replacement surgery can also be very challenging. Those who do have successful knee replacement surgery may find that theirs is a short-lived success story. Those with a lesser advanced or milder form of hypermobile Ehlers-Danlos Syndrome hEDS may give good outcome reports. People with more advanced hEDS, noting dozens of knee subluxations or dislocations before the knee replacement, will report lesser success in many cases. The obvious goal of knee replacement in hEDS patients is less pain, less subluxation, and more stability. In this article, we will explore knee replacement outcomes, who it may work for and who it may not, and alternatives to the knee replacement that may work for some patients.

Article Summary:

Sometimes a patient will finally be diagnosed with hEDS after they have a knee replacement that fails

When people reach out to us, they will often report a long history of knee surgeries. Not just knee replacements, but some surgeries were to repair damaged ligaments, this would include multiple ACL reconstructions. Some surgeries were to fix the original knee replacement surgery. It is in patients like these, especially someone on the younger side, in their 40s, with a history of four, it took five, six, or even 10 surgeries for a diagnosis of Ehlers-Danlos syndrome hypermobility type (hEDS) to be finally suspected at some point during the long surgical history.

We will often hear about people who had a knee replacement and they continue to tear the surviving ligaments. In some cases, these people were diagnosed with hEDS after they had a knee replacement because they were suffering from problems that the doctors could not figure out. These concerning and unexplained pains included:

  • Pain into the shin bone at the end of the stem portion of the hardware
  • Crepitus in the form of crunching or grinding sensation in the knee
  • Loss of strength and stability in the knee.

It should also be pointed out that hEDS were suspected in patients who not only continued to tear ligaments in their knee following a knee replacement, but they continued to tear ligaments in other joints such as their shoulder or they had problems with TMJ.

Following a total knee replacement, concern exists that hypermobility will affect the outcome as the prosthesis relies on soft tissues for stability.

Someone will get a knee replacement or replacements because, as they will tell us, “they had no choice.” They had advanced arthritis, and extreme knee instability, and they could no longer walk without a walker or cane. Many times these people will only be in their 40s or 50s. Some patients reported that they were fortunate to have hEDS-knowledgeable surgeons who knew to spare as much soft tissue as possible to allow the patient a more successful physical therapy following surgery and the ability to keep their knee muscular support stronger.

A key issue, as we will discuss below is the soft tissue of the knee, particularly the ligaments. In February 2019 research from doctors at the Mayo Clinic and published in The Journal of Arthroplasty,(1) noted that following total knee arthroplasty (knee replacement), concern exists that hypermobility will affect the outcome as (the) prosthesis relies on soft tissues for stability.

In this research, 16 patients (20 knees) with Ehlers-Danlos Syndromes (EDS) who had total knee replacement was examined were followed.

Observational notes:

In 2018, surgeons reported in the BMJ Case Reports,(2) a publication of the British Medical Association, the case of a 53-year-old postmenopausal woman with hypermobile EDS and a history of a partial lateral meniscectomy and right-sided knee pain for over a year. She had lateral osteoarthritis and a valgus (knee bent inward) deformity of 10 degrees.

The Beighton criteria were determined to evaluate the grade of hypermobility and she scored 7 out of 9, therefore, she was classified as ‘generalized hypermobility’. The patient had no other clinical signs of (hEDS) except for musculoskeletal hyperlaxity.

Two knee replacements, three revision knee replacement surgeries, granuloma (inflammation)

“I have finally been diagnosed with Ehlers-Danlos Syndrome and I am just as confused as before.”

One of the incredible things about Ehlers-Danlos syndrome is the amount of confusion it can create in some patients and their doctors. A person will contact us having the idea that there are different classifications of Ehlers-Danlos Syndromes but unsure which one impacts them. Once in a while, we will hear a patient say that they never got a classification because their primary doctor told them the classifications didn’t matter because there is nothing that can be done about it, there are no effective treatments.

The difficulty in Ehlers-Danlos Syndrome patients being understood is difficulty in getting treatments that can help prevent knee surgery after knee surgery.

When we receive emails from people looking for help, they typically start with a medical history of many years even decades. We get emails that go like this:

“The typical Hypermobile Ehlers-Danlos story.”

During my teenage years, I would fall down a lot and get hurt. I was told that I was just awkward and would grow out of it. When I did not grow out of it, awkwardness became clumsiness and I should stop being a “drama queen,” people think I am faking it. When my knee pain became worse, the orthopedist I saw during my freshman year of college started to understand that I had something going on.

Later that year I had my first knee surgery. However, it was not for another 20 years, after many other health problems including digestive problems, gynecological problems, hip, neck, and shoulder instability with continued knee pain that I finally was diagnosed with hEDS. I am looking for more permanent relief than physical therapy, chiropractic manipulations, tapes, and knee braces are providing.

My first knee replacement in my early 30s

I started developing terrible knee pain when I was young. By the time I was in my early thirties, I had to have a knee replacement. After the knee replacement, I continued to have pain issues. I was finally diagnosed with hEDS. I have been trying to manage my hypermobility with good nutrition and proper exercise but I still find myself needing medications. I can feel the obvious degenerative disease going on in all my joints.

Both knees replaced

I had both knees replaced over 10 years ago. The first few years everything was great, I was very happy with the knee replacements. Then a few years back I started to have a more intense type of pain in both knees. One knee started to hurt worse than the other, but they both hurt. It is very similar pain to the type of pain I had before the knee replacements. I am having issues with the instability that is making my walking clumsy and off balance. I have seen many doctors and they don’t know what to do. I had surgery to burn out the nerves in my right knee, with no success.

Knee replacement appears to be an effective option for knee arthritis and instability in Ehlers-Danlos Syndrome patients, although results and satisfaction are lower

The challenges of having a satisfactory knee replacement have been discussed in the medical literature for many years. In 2004 (3) doctors at the Department of Orthopedic Surgery at the Mayo Clinic, Rochester followed ten Ehlers-Danlos Syndrome patients with 12 primary knee replacements. Two patients have both knees replaced. It should be noted that the average age of these ten patients at the time of knee replacement was about 43 years old. The outcomes in these patients were observed for an average of 65 months after surgery.

The reasons these patients had the knee replacement surgery were because they had:

Knee replacement can help hEDS patients who had knee fusion

Patients who have had knee fusion understand that they had this procedure because at the time knee replacement was not an option for them. In essence, the thigh bone and shin bone are made into one long bone that does not bend or rotate. In 2013 doctors reported (4) on a 46-year-old female patient with Ehlers-Danlos Syndrome had undergone a fusion of her right knee 25 years earlier. This markedly affected her quality of life. She underwent a two-stage conversion to a constrained rotating-hinge total knee arthroplasty. She regained a satisfying range of motion and she has a pain-free, mobile, and stable knee at 42 months follow-up. Conversion of knee fusion to total knee replacement is a demanding procedure that should only be performed by experienced knee surgeons, in selected cases, and on highly motivated patients. Complication and revision rates are reportedly very high but global satisfaction is surprisingly good.

So what do we do for people like this? Prolotherapy Treatment for hEDS

In this video, Ross Hauser, MD discusses Ehlers-Danlos Syndrome and ligament laxity. Explanatory notes and a summary is provided below the video. Please see the companion article: Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Injection Treatments.

The main points in regard that Ehlers-Danlos Syndrome as it  relates to ligament laxity and Prolotherapy

Alternative to surgery

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

A recent paper published in the medical journal Disability and Rehabilitation (5suggests that medical research seems to be stuck in offering good treatments for patients with hEDS-related joint pain and degenerative joint disease.

Here are the summary learning points of this paper:

The standard care treatments evaluated

“Participants with Ehlers-Danlos Syndrome reported the most helpful methods for managing acute pain were:

while chronic pain was treated most effectively with opioids, heat therapy, splints or braces, and surgical interventions.”


If we take splints and braces, heat therapy, and physical therapy treatments at face value we find a group of treatments that seek to stabilize a painful joint (hold it together with splints and braces), bring circulation to the joint, (heat therapy), stresses movement (physical therapy) to build up strength in the joint. These are all part of the therapeutic properties of Prolotherapy injections.

We believe Prolotherapy offers great hope to those with symptoms of hypermobility because it is designed to successfully treat the ligament and tendon laxity that accompanies Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome, as well as strengthen the joints in the body.

Prolotherapy is

In this section, we will lay the foundation for the treatment of patients suffering from Ehlers-Danlos syndrome, 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. Patient outcomes are described below.

Prolotherapy is an in-office injection treatment that research and medical studies have shown to be an effective, trustworthy, and reliable alternative to surgical and non-effective conservative care treatments. In our opinion, based on extensive research and clinical results, Prolotherapy is superior to many other treatments in relieving the problems of chronic joint and spine pain.

Knee instability after knee replacement

In our office, we see many patients with continued knee instability after knee replacement.

In this video, Ross Hauser, MD explains the problems of post-knee replacement joint instability and how a treatment to repair damaged and weakened ligaments can tighten the knee. This treatment does not address problems of hardware malalignment. 

Summary of this video:

It is very common for us to see patients after knee replacement who have these clicking sounds coming from knee instability. This is not instability from hardware failure. The hardware may be perfectly placed in the knee. It is instability from the outer knee where the surviving ligaments are. I believe that this is why up to one-third of patients continue to have pain after knee replacement. Dr. Hauser performs an ultrasound scan of the patient’s knee. Small, gentle stress on the knee reveals hypermobility. This is the ligaments’ inability to hold the whole knee joint in place. Prolotherapy can be very successful in helping patients who had a knee replacement and still have knee pain. The treatment tightens the whole joint capsule.

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

In the Journal of Prolotherapy in 2013. 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:

Prolotherapy does not work for every patient, some of the rationales for using Prolotherapy for patients with Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome include that it has:

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.

If this article has helped you understand the complications of knee replacement and you have more questions, get help and information from our specialists


1 Tibbo ME, Wyles CC, Houdek MT, Wilke BK. Outcomes of Primary Total Knee Arthroplasty in Patients With Ehlers-Danlos Syndromes. The Journal of arthroplasty. 2019 Feb 1;34(2):315-8. [Google Scholar]
2 Farid A, Beekhuizen S, van der Lugt J, Rutgers M. Case Report: Knee joint instability after total knee replacement in a patient with Ehlers-Danlos syndrome: the role of insert changes as practical solution. BMJ Case Reports. 2018;2018. [Google Scholar]
3 Arthur K, Caldwell K, Forehand S, Davis K. Pain control methods in use and perceived effectiveness by patients with Ehlers-Danlos syndrome: a descriptive study. Disabil Rehabil. 2016 Jun;38(11):1063-74. [Google Scholar]
4 Cermak K, Baillon B, Tsepelidis D, Vancabeke M. Total knee arthroplasty after former knee fusion in a patient with Ehlers Danlos syndrome. Acta Orthop Belg. 2013 Jun 1;79(3):347-50. [Google Scholar]
5 Rose PS, Johnson CA, Hungerford DS, McFarland EG. Total knee arthroplasty in Ehlers-Danlos syndrome. The Journal of arthroplasty. 2004 Feb 1;19(2):190-6.  [Google Scholar]

This article was updated May 24, 2023


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