Ehlers-Danlos Syndrome and knee replacement complications

Ross A. Hauser, MD. Caring Medical Florida

Patients with EDS can have successful knee replacement surgery. It can also be very challenging. While we hear of many successful knee replacements, many of which we hear about in our examination rooms when the patient comes in for treatment to tighten up some post-surgical knee instability, we also hear stories like this.

A patient will report a long history of knee surgeries. 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 40’s, a history of four, five, six even 10 surgeries that a diagnosis of Ehlers-Danlos syndrome hypermobility type (hEDS) would finally be suspected at some point during the many surgeries.

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

As in the story we just shared above, 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 the 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 was suspected in patients who not only continued to tear ligaments in their knee following knee replacement, but they continued to tear ligaments in other joints.

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

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 reporting 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 and therefore she was classified as ‘generalized hypermobility’. The patient had no other clinical signs of (hEDS) except for the musculoskeletal hyperlaxity.

Two knee replacements, three revision knee replacement surgeries, granuloma

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

One of the incredible things about Ehlers-Danlos Syndromes is the amount of confusion it can create in some patients and their doctors. A person will contact us having an 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 being understood is difficulty is 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 it. When I did not grow out of it, awkwardness became clumsiness and that 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 a more permanent relief than physical therapy, chiropractic manipulations, tapes and braces are providing.

My first knee replacement in my early 30’s

I started developing terrible knee pain when I was young. By the time I was in my early thirties I had to have 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 pain in both knees. One knee started to hurt worse than the other, but they both hurt. It is a very similar pain to the type of pain I had before the knee replacements. I am have issues with instability that is making my walking clumsy and off balanced. I have seen many doctors and they don’t know what to do. I had a surgery to burn out the nerves in my right knee, no success.

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 summary is provided below the video.

The main points in regard that Ehlers-Danlos Syndrome as a 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 (3suggests 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.”

COMMENT:

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 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. Patient outcomes are described below.

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 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 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 which coming from knee instability. This is not an 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. A small, gentle stress on the knee reveals hypermobility. This is the from 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:

Some of the rationale 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 your 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]

2565

 

Make an Appointment |

Subscribe to E-Newsletter |

Print Friendly, PDF & Email
Facebook Reviews Facebook Oak Park Office Review
SEARCH
for your symptoms
Prolotherapy, an alternative to surgery
Were you recommended SURGERY?
Get a 2nd opinion now!
WHY TO AVOID:
★ ★ ★ ★ ★We pride ourselves on 5-Star Patient Service!See why patients travel from all
over the world to visit our center.
Current Patients
Become a New Patient

Caring Medical Florida
9738 Commerce Center Ct.
Fort Myers, FL 33908
(239) 308-4701 Phone
(855) 779-1950 Fax Fort Myers, FL Office
We are an out-of-network provider. Treatments discussed on this site may or may not work for your specific condition.
© 2021 | All Rights Reserved | Disclaimer