Whiplash and Post-Concussion Syndrome in the Ehlers-Danlos Syndrome patient
Ross Hauser, MD.
We will often see a patient who has a seemingly impossible list of medical challenges and symptoms. These are the patients who have a diagnosis of hypermobile Ehlers-Danlos Syndrome. When these people suffer an injury, beyond the chronic joint dislocations and subluxations that have become part of their lives these people’s lives can take a dramatic turn downward. If you are reading this article, this situation may describe you, your child, or a loved one who has suffered from whiplash. Obviously now, you are looking for as much information as you can get.
Article summary and headings:
- Trying to figure out what was wrong with them. People tell us their stories every day.
- “My constellation of symptoms do not match my test results”
- Understand the problems of neck and head movements and muscle endurance.
- Whiplash is whiplash, hEDS hypermobile type is hEDS hypermobile type. They are not commonly explored together.
- “Health-care clinicians must be aware of these issues related to EDS/hypermobility syndromes both when assessing the clinical presentations and planning treatment and rehabilitation interventions.”
- Treating hEDS and Whiplash-Associated Disorders as one.
- Why do patients have a poor expectation of recovery from whiplash-associated disorders?
- When I was a new doctor I reviewed medical records of patients who were injured in car accidents. I learned that doctors didn’t understand some of the crucial concepts of whiplash.
- “Whiplash causes you more pain than imaging studies can verify – doctors can become skeptical of your pain.”
- YET up to 50% of people who experience a whiplash injury will never fully recover
- Whiplash caused hip pain, hand pain, stomach pain, and pain in the genitalia, especially in women. Clearly, there is something causing more pain for these people.
- When a patient with hEDS and Craniocervical instability gets a whiplash. The journey begins.
- When it comes to whiplash and hEDS, we may not see everything on an MRI
- TREATMENT: Repairing the ligaments and cervical spine curve for a long-term fix
- Cervical Spine Instability in the hEDS patient A video explanation with Ross Hauser, MD.
- Assessing cervical instability with Digital Motion X-Ray
- The treatment of cervical spine instability at the Hauser Neck Center – Research on cervical instability and Prolotherapy
In the image below the caption reads: Ligament strain with cervical extension and flexion during whiplash injury. Hyperextension stretches the posterior ligamentous complex whereas hyperextension causes strain (stretch) on the anterior intervertebral disc and anterior longitudinal ligament.
The two patients:
- I was already diagnosed with Ehlers-Danlos Syndrome.
- I was diagnosed with Ehlers-Danlos Syndrome after the accident because no one could figure out why my whiplash was so bad.
For some people described in this article, they already knew that they had Ehlers-Danlos Syndrome or hEDS hypermobile type syndrome at the time of their accident. The diagnosis was part of their management of the new injuries incurred. For others, the diagnosis of hEDS came after months of trying to figure out what was wrong with them and why their whiplash injury had turned into a myriad of troubling symptoms.
Trying to figure out what was wrong with them. People tell us their stories every day. One may go something like this:
After months of trying to figure out what was wrong with me, excessive headaches, migraines, (I had Botox® injections that helped a little), brain fog, chronic fatigue, and memory difficulties, my doctors were now at a loss.
In the accident, I had suffered ligament sprains from my neck all the way down to my lumbar spine. The impact of this rear-end accident was not that hard or powerful, yet, I was told I was describing symptoms as if I was hit at 100 mph.
Some of my doctors could not add up the symptoms to the damage they were seeing on films, or the pain I was trying to describe. Yes, it was at this time some of my doctors started to talk about anti-depressants and psychiatric consultation. The hope was if I could return to my “normal,” life, I would not have time to pay attention to my symptoms.
As time progressed the list of symptoms started to include nausea and something that came on out of nowhere. My body had become very noisy. I was cracking, popping almost at every joint. Suddenly I had pain everywhere, ankles, knees, hips, elbows, hands, shoulders, in addition to the spinal problems I was having as a result of the accident.
I was sent to physical therapy to see if they could “make some sense of this.”
What this story describes is something that you probably have experienced yourself. The idea is that you have too much pain or too much disability for the injury you suffered. You are being passed on from specialist to specialist to see if “someone can make sense of this.”
“My constellation of symptoms do not match my test results”
A few people have described their doctor visits to us with the following: “my constellation of symptoms does not match my test results.” They go on to tell us that their MRI “showed nothing,” yet these same people could not turn their heads to the right or the left. They argue with their physical therapist that they “can’t” do something the physical therapists think they can. It is not just the physical limitation of pain turning their head to the right or left, it is the worsening of symptoms they may encounter. They may not be able to turn their head to the right or left because if they do, they may pass out. For some, the act of passing out or near fainting is seen as a psychiatric disorder. Please see our article How cervical spine instability disrupts blood flow into the brain and causes many neurological problems. We hope this article may offer you some insight into the physical manifestation of cervical spine instability and fainting.
For some of these people, they “get lucky” and someone has figured out that they may have hEDS because when asked if they suffered a lot of injuries or dislocations in the past, and the answer came back “YES!”, the suspicion was confirmed and the diagnosis of hEDS was finally made using a Beighton test.
Whiplash is whiplash, hEDS hypermobile type is hEDS hypermobile type. They are not commonly explored together.
It is somewhat an indictment of medicine’s limited understanding of whiplash injury in the hEDS patient that in fact, there are very few published research papers on the subject. We have been treating hEDS and whiplash patients approaching thirty years now and we have seen through clinical observation and empirical evidence the extra burden whiplash injury can have on the hEDS patient.
We like to review and explore the research of others to see how other doctors assess and treat many of the problems we see. As just noted, this is difficult when it comes to whiplash-associated disorders and hEDS hypermobile type. There is little to explore because there is very little research. There is a lot on whiplash, there is a lot of hEDS, but there is little concerning both. This may be why your doctors have been so confused and single-focused on the whiplash injuries.
In July 2020, in the Journal of Clinical Medicine, (1) doctors made a comparison of pain and symptoms in patients with Ehlers–Danlos syndrome (EDS) and hypermobility syndromes (HMS), with people suffering from whiplash-associated disorders, spinal pain, and fibromyalgia, but not if they had both. The reason for this study was to get a better understanding of the clinical characteristics of Ehlers–Danlos syndrome (EDS) and hypermobility syndromes (HMS).
Understand the problems of neck and head movements and muscle endurance
A March 2022 paper published in the medical journal PeerJ (8) cited this research in helping doctors and clinicians understand the problems of neck and head movements and muscle endurance in patients with general joint hypermobility and confirmed hypermobility Beighton scores. The learning points of this research:
Cervical proprioception (the subconscious movement of neck muscles, the ability to move your head and neck without thinking about moving them) and muscle endurance are essential for maintaining cervical functional joint stability. Proprioception and muscle endurance may be impaired in those with general joint hypermobility. Examining these aspects is crucial. This study’s aims were to
(1) compare the cervical joint position error (in simplest terms a test to determine your ability to move your head and neck and get it back into the right position – turning your head to the side and then getting it straight looking forward, without thinking about it) and muscle endurance holding capacities in general joint hypermobility individuals with and without non-specific neck pain.
(2) to assess the relationship between hypermobility Beighton scores, cervical joint position errors, and muscle endurance in general joint hypermobility individuals with and without non-specific neck pain.
Results: “Conclusion: General joint hypermobility individuals with non-specific neck pain showed increased cervical joint position errors and reduced muscle endurance compared to asymptomatic. Individuals with general joint hypermobility with higher Beighton scores demonstrated increased cervical joint position errors and reduced neck muscle endurance holding ability. In clinical practice, therapists should be aware of these findings, incorporate proprioceptive and muscle endurance assessments, and formulate rehabilitation strategies for non-specific neck pain individuals with general joint hypermobility.”
The caption of the phot reads:
Proper head and cervical position in a collar documented by x-ray traction chin forward retraction chin back easily can be easily seen the atlas C1 and axis C2 are in much better positions in the retracted chin position as it moves C1 back and increases the C1 nerve and C2 nerve spaces demonstrated by the arrows.
“Health-care clinicians must be aware of these issues related to EDS/hypermobility syndromes both when assessing the clinical presentations and planning treatment and rehabilitation interventions.”
Briefly here are some of the findings of this study
- Women were represented in more than 90% of EDS/hypermobility syndromes cases and fibromyalgia cases and in about 64% of the other groups (the whiplash-associated disorders and spinal pain groups).
- The Ehlers–Danlos syndrome (EDS) and hypermobility syndromes (HMS) group was significantly younger than the others but had a longer pain duration.
- The pain intensity in Ehlers–Danlos syndrome (EDS) and hypermobility syndromes (HMS) was like those found in spinal pain and whiplash-associated disorders; fibromyalgia had the highest pain intensity.
- Depressive and anxiety symptoms were very similar in the four groups.
- Vitality was low both in EDS/HMS and fibromyalgia. (This was a measurement of excessive fatigue).
- Physical health was lower in EDS/HMS and fibromyalgia than in the two other groups.
The conclusion was: “Health-care clinicians must be aware of these issues related to EDS/hypermobility syndromes both when assessing the clinical presentations and planning treatment and rehabilitation interventions.”
These are things you probably already knew and the confused response of your doctors is something you have observed. What we can get out of this is that doctors are telling doctors that they must be aware of pain intensity, fatigue, depression, anxiety, poorer health should be a least a small glimmer of optimism that someone is looking in the right direction.
Treating hEDS and Whiplash-Associated Disorders as one
This is a familiar story we hear: Someone will contact our center. They have hEDS. Before their car accident they reported that they suffered from chronic neck pain, digestive issues, dizziness and vertigo, “all over” joint pain, and subluxation.
Then they will tell us about an accident or even accidents where they suffered multiple head trauma and whiplash. Following the accident and whiplash injury, they started to have neurologic-like symptoms including headaches, brain fog, memory loss, and in some instances had to be prescribed medications for attention deficient disorder or as if they were not getting enough oxygen or blood to the brain.
Another story will describe a prior diagnosis of hEDS and then significant cervical spine damage from a whiplash causing herniation and instability along the C3-T1. Following the accident, significant headache and head pain added to their diagnosis to now include Trigeminal Neuralgia, POTS, Seizures, and more.
What can we do for people like this?
What can we do for people like this? In this section, we are going to discuss whiplash-associated disorders first. We have an extensive article on this topic here: Treatment of Whiplash-Associated Disorders. This article will summarize the learning points of that research.
Our goal here is to plot out a treatment plan by addressing the variable of your health condition, the acquired whiplash problems to your already present problem of hEDS. At our center, we see many patients with chronic whiplash symptoms. Some of these people have also been diagnosed with hEDS. Because of their hEDS, some of these people have taken a more perilous and long journey to recovery than the people with chronic whiplash symptoms. Let’s make no mistake in our use of comparisons. Many people with chronic whiplash symptoms and whiplash-associated disorders do not have an easy course of it either. It just may not be as challenging as the route the hEDS patients may take.
Patients share the same experiences:
hEDS patients with whiplash, and, whiplash patients will typically share the same experiences. They have been bouncing from one clinician to another looking for answers to problems that seemingly evade all treatments. They tell similar tales of:
- I had an x-ray and nothing “remarkable,” was seen.
- My MRI and x-ray did not show anything wrong.
- The first epidural helped a lot but the pain started to come back.
- I was told that eventually, all these problems would go away. My problems are not going away.
Why do patients have a poor expectation of recovery from whiplash-associated disorders?
Looking into the minds of automobile accident victims
In the August 2018 edition of The Clinical Journal of Pain, (2) researchers looked into the minds of automobile accident victims to help doctors determine which psychological factors are important in the development of chronic whiplash symptoms.
The patients studied were more likely to have:
- Poor expectations of recovery,
- Posttraumatic stress symptoms, (which may include severe anxiety, flashback to accident fears, anger, self-destructive behavior (drug or alcohol use), and isolation.
In this group is also the challenge of avoidance of treatment or what doctors term “passive coping.” The patient avoids trying to solve the problems they are facing, partly because they have a poor expectation of recovery.
When I was a new doctor I reviewed medical records of patients who were injured in car accidents. I learned that doctors didn’t understand some of the crucial concepts of whiplash
From Ross Hauser, M.D., article author:
Early in my career, while my Prolotherapy (non-surgical treatment options explained below) practice was building, I did hundreds of expert medical reports, reviewing medical records of patients who were injured in car accidents. I did my best, to be honest, and render expert opinions about what I felt the injuries were due to and what was appropriate care for their injuries. Most patients, lawyers, and even doctors involved in both the healthcare aspect and legal aspect of whiplash injury often don’t understand some of the key concepts of whiplash that we will discuss below.
After reviewing all these cases, I personally believe the best treatment for whiplash injuries was to address the ligament problems in the cervical spine possibly damaged in the whiplash injury and the subsequent degenerative weakening of these ligaments that can cause a myriad of symptoms, some of which are described above.
Why the ligaments?
When a person has a whiplash injury, they suffer a rapid flexion and extension of the neck and that causes injuries to the cervical neck ligaments. It is these ligament injuries that cause long-term pain. Whiplash injury causes ligament injury, which causes joint instability, which causes the vertebrae to go out of alignment. In our office, we try to stimulate the ligaments to repair themselves. Specifically with Prolotherapy which involves the injection of a healing stimulating proliferant (dextrose) into the damaged ligaments. This causes the ligaments to tighten and strengthen, making for stability in the neck which stops muscle spasms and resolves pain.
Our results of the treatment are published below.
In this video Danielle R. Steilen-Matias, MMS, PA-C, focuses on the injury to the cervical spine ligaments as the cause of degenerative disc disease in the cervical spine and the myriad of neurological and musculoskeletal conditions these injuries may cause.
A summary of the video is below:
- A patient that is suffering from whiplash-associated disorders may have suffered significant cervical spine ligament injury.
- This damage renders the neck “unstable.”
- The cervical spine ligaments are like rubber bands that wrap around the cervical vertebrae and hold the cervical spine in its proper place and in its proper alignment. If these ligaments “rubber bands,” have been stretched out or damaged or loosened, the cervical vertebrae are going to slide in and out of place and compress on nerves and blood vessels that can contribute to all the symptoms they face.
- Damaged ligaments can be the cause of muscle spasms and the patient’s failure to adequately respond to physical therapy.
- At 4:05 of the video, an example of a digital motion x-ray DMX evaluation is shown. The DMX is an x-ray movie that can illustrate how the vertebrae are moving and where they are moving and sliding too much. This allows us to pinpoint treatment.
“Whiplash causes you more pain than imaging studies can verify – doctors can become skeptical of your pain.”
One thing that hEDS patients with whiplash-associated disorders share with patients with whiplash-associated disorders and no diagnosis of hEDS is that some doctors don’t believe them. We discussed this above. However, the problem of “it’s all in your head” becomes much more of a problem when the “MRI and X-rays show nothing.” This, however, does not mean that there is nothing there. That is not solely our opinion.
In research published in the medical journal Spine (3) and reprinted in the Journal of Manipulative and Physiological Therapeutics, Linda J. Carroll, Ph.D., of the Department of Public Health Sciences, School of Public Health, University of Alberta lead a study from The Bone and Joint Decade 2000-2010 Task Force on Neck Pain and Its Associated Disorders (Neck Pain Task Force) came up with this conclusion in regard to patients suffering from whiplash-associated disorders (WAD).
In examining 226 articles related to treatment course and prognostic factors in neck pain and its associated disorders, the team discovered that the evidence suggests that:
- Approximately 50% of patients with WAD will report neck pain symptoms 1 year after their injuries.
- Greater initial pain, more symptoms, and greater initial disability predicted slower recovery.
- Few factors related to the collision itself (for example, the direction of the collision, headrest type) were prognostic; however, post-injury psychological factors such as passive coping style, depressed mood, and fear of movement were prognostic for slower or less complete recovery.
YET up to 50% of people who experience a whiplash injury will never fully recover
Dr. Michele Sterling of the Centre for National Research on Disability and Rehabilitation Medicine, at The University of Queensland, interpreted these findings in The Journal of manual & manipulative therapy as:
“Whiplash-associated disorders are a common, disabling, and costly condition that occurs usually as a consequence of a motor vehicle crash. While the figures vary depending on the cohort studied, current data indicate that up to 50% of people who experience a whiplash injury will never fully recover and up to 30% will remain moderately to severely disabled by their condition.”(4)
Whiplash caused hip pain, hand pain, stomach pain, and pain in the genitalia, especially in women. Clearly, there is something causing more pain for these people.
One of the reasons people may not fully recover from their whiplash injury is because the whiplash injury has “grown into something more” than a neck injury.
Writing in the European Pain Journal, (5) doctors found that whiplash caused more pain in other regions of the body than other pain causes. For example, whiplash-associated disorders caused:
- greater intensity back pain than chronic back pain did,
- greater intensity shoulder pain than chronic shoulder pain did,
- even greater intensity neck pain than chronic neck pain not associated with whiplash.
- Women with whiplash-associated disorders also reported pain in the hip, arm, hand, stomach, chest, and genitalia more often than women with chronic pain originating in other joints.
With individuals with whiplash-associated disorders also reporting pain in a wide range of bodily locations, a higher number of painful locations and higher pain intensity than individuals with chronic pain from other causes AND no differences were not accounted for by differences in pain tolerance than with control subject. Clearly, there is something causing more pain for these people. Is it Ehlers-Danlos Syndrome? This study did not look for that connection.
When a patient with hEDS and Craniocervical instability gets a whiplash. The journey begins
People with hEDS may already have craniocervical instability when they suffer from a whiplash injury. Here is an understanding of what these people may face BEFORE there was a whiplash injury.
This is a paper from 2017 published in the American Journal of Medical Genetics. Part C, Seminars in Medical Genetics (6). It reports on “the neurological manifestations that arise including the weakness of the ligaments of the craniocervical junction and spine, early disc degeneration, and the weakness of the epineurium and perineurium (soft tissue) surrounding peripheral nerves.”
What the doctors here were trying to do was connect Ehlers-Danlos syndrome and craniocervical instability with symptoms to include “increased prevalence of migraine, idiopathic intracranial hypertension, Tarlov cysts (nerve root cysts), tethered cord syndrome, and dystonia, where associations with Ehlers-Danlos syndrome have been anecdotally reported, but where epidemiological evidence is not yet available.”
Further, they explored the connection between Chiari Malformation Type I (CMI) and Ehlers-Danlos syndrome, and how this condition may be complicated by craniocervical instability or basilar invagination. Motor delay, headache, and quadriparesis have been attributed to ligamentous (ligament) laxity and instability at the atlanto-occipital and atlantoaxial joints, which may complicate all forms of EDS.
They continued: “Discopathy and early degenerative spondylotic disease manifest by spinal segmental instability and kyphosis, rendering EDS patients prone to mechanical pain, and myelopathy. Musculoskeletal pain starts early, is chronic and debilitating, and the neuromuscular disease of EDS manifests symptomatically with weakness, myalgia, easy fatigability, limited walking, reduction of vibration sense, and mild impairment of mobility and daily activities. Consensus criteria and clinical practice guidelines, based upon stronger epidemiological and pathophysiological evidence, are needed to refine diagnosis and treatment of the various neurological and spinal manifestations of EDS.”
We may not see everything on an MRI
That is how the above paper concludes. The researchers are suggesting to their colleagues that we look for ways to more accurately assess the patient with various neurological and spinal manifestations of Ehlers-Danlos syndrome.
At the Association of British Neurologists (ABN) / Society of British Neurological Surgeons (SBNS) Joint meeting of September 2018, (7) research lead by The National Hospital for Neurology and Neurosurgery in London, presented the following findings on the effectiveness or ineffectiveness of employing recumbent (lying flat) or upright, dynamic MR imaging to determine the extent of cervical spine hypermobility in patients suspected of Ehlers-Danlos Syndrome. Here is the summary of findings:
- In patients with Ehlers-Danlos syndrome, neck pain is a prominent feature. Structural abnormalities may have a dynamic (in motion) element that may not be captured in a recumbent (lying flat – static) MRI.
- When standing in an upright MRI, the neck can be posed in extension and flexion and these MRIs can demonstrate a greater amount of abnormalities.
- Still, there is currently a lack of evidence assessing the use and diagnostic impact of positional MRI in Ehlers-Danlos syndrome.
We are going to discuss this further below. At our center structural abnormalities that may have a dynamic (in motion) element, are essential in understanding the patient’s problems. Please see the related article: Ross Hauser, MD. Reviews of Diagnostic Imaging Technology for Cervical Spine Instability
TREATMENT: Repairing the ligaments and cervical spine curve for a long-term fix
So now we have brought you to the point of understanding that hEDS sufferers have pre-existing cervical spine instability, they suffer from the same problems, sometimes worse than people with whiplash disorders do who do not have hEDS. Many people cannot get adequate treatment and in fact, are told to “come to terms that there is nothing wrong with you go see a psychiatrist.”
The goal of our treatment is to repair and strengthen the cervical ligaments and get your head back in alignment with the shoulders in a normal posture. We do this with Prolotherapy.
Prolotherapy is an injection of simple dextrose into the unstable cervical spine. The concept is that these injections will strengthen the cervical ligaments thereby providing a stronger or more stable connection between the cervical vertebrae.
Cervical Spine Instability in the hEDS patient A video explanation with Ross Hauser, MD.
Video summary and learning points:
When a person comes to our center with hEDS or any genetic hyperextensible condition where a person has joint instability, a history of dislocating joints, or their joints are hyper-flexible is to assess the amount of neck instability the person has.
- If a person with hEDS has neck instability that neck instability can cause things such as postural orthostatic tachycardia syndrome, Mast Cell Activation Syndrome, digestive problems, besides the other symptoms such as migraine headaches, dizziness, ringing in the ears, concentration difficulties, and terrible fatigue among other symptoms.
Assessing cervical instability with Digital Motion X-Ray
Above we discussed many problems that the MRI does not reveal: In the video, Dr. Hauser explains the DMX or digital motion x-ray.
- In patients with Ehlers-Danlos syndrome, neck pain is a prominent feature. Structural abnormalities may have a dynamic (in motion) element that may not be captured in a recumbent (lying flat – static) MRI.
The way we assess cervical instability is by Digital Motion X-Ray. The DMX is a movie about the movement of the bones with various neck motions. When you watch the video, you will see a moving image of this patient’s neck. This gives our clinicians insight into the patient’s range of motion where impingement or compression may be occurring.
Please see our article: Ehlers-Danlos Syndrome and Craniocervical instability: Making a diagnosis. It has a more detailed and extensive discussion of how we diagnose the problems of cervical spine instability which is the main problem in whiplash patients.
The treatment of cervical spine instability at the Hauser Neck Center – Research on cervical instability and Prolotherapy
In the above article, we suggest that many of the problems related to whiplash and hEDS can be treated by addressing cervical spine instability in the neck. There are many ways to treat this problem. Our preferred choice is regenerative medicine injections that begin with Prolotherapy.
Caring Medical has published dozens of papers on Prolotherapy injections as a treatment in difficult to treat musculoskeletal disorders. Prolotherapy is an injection technique utilizing simple sugar or dextrose. Our research documents our experience with our patients.
The technique is demonstrated in this video.
Restoring proper cervical curve. An individualized treatment protocol may include the following:
- A certain number of Prolotherapy visits to resolve the instability.
- Chiropractic consultation and treatment
- An initial period of cervical immobilization with a cervical collar in order to limit neck forces while the ligaments regenerate.
- Rescanning every two visits to ensure the Prolotherapy is resolving the instability.
- When improved spinal stability is demonstrated, CCRT using cervical weights will be started. In some severe spinal curves, CCRT using cervical weights is started immediately. Changing the spinal curve can take just minutes for some patients to several months in others.
The treatment regimen is continued until the person can do all desired activities with minimal symptoms and spinal curve kinematics (curve) are improved.
Summary and contact us. Can we help you? How do I know if I’m a good candidate?
We hope you found this article informative and it helped answer many of the questions you may have surrounding Whiplash injury in the Ehlers-Danlos Syndrome patient. Just like you, we want to make sure you are a good fit for our clinic prior to accepting your case. While our mission is to help as many people with chronic pain as we can, sadly, we cannot accept all cases. We have a multi-step process so our team can really get to know you and your case to ensure that it sounds like you are a good fit for the unique testing and treatments that we offer here.
Please visit our page Your First Ehlers-Danlos Syndrome/ Full-body Hypermobility Visit for new patient information or
References for this article:
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This article was updated August 3, 2022