Neck-Tongue Syndrome treatments

Ross Hauser, MD

Neck-Tongue Syndrome is considered a rare disorder. It is considered so rare that when learning institutes or universities get a patient that is confirmed with Neck-Tongue Syndrome they write up a case history to share with their colleagues because of the rareness of the diagnosis. But how rare is this problem or is it simply misdiagnosed or misunderstood and more apparent than initially thought.

In our office we see many patients with numbness or other unusual sensations in the tongue. While this may be their most troubling symptoms it is rarely a symptom that the patients have by itself. Accompanying this tongue numbness can problems of neck pain. This has been described by other doctors as well.

A paper published in the journal BMJ case reports (1) offers this description of the problem.

“Neck-tongue syndrome is a rarely reported disorder characterized by paroxysmal (sudden or acute attacks or) episodes of intense pain in the upper cervical or occipital areas associated with ipsilateral (one-side of the neck and/or head) hemiglossal (one half of the tongue) dysaesthesia (a sensation that is not right or normal) brought about by sudden neck movement. The most likely cause of this clinical entity is a temporary subluxation of the lateral atlantoaxial joint with impaction of the C2 ventral ramus (nerve) against the articular processes (the back of the cervical vertebrae) on head rotation. Neck-tongue syndrome is an under-recognized condition that can be debilitating for patients and challenging for the treating physicians.”

But as mentioned, this problem of one-half sided tongue numbness is usually one of many problems that a person will suffer from. We often see and hear from people who describe the following challenges they face:

My tongue is always numb and that is just the start of it.

I have problems with my tongue, it is always numb and sometimes it will not even move. It is causing problems with my speech and I have swallowing difficulties. I also have jaw pain, neck pain, and random headaches. I have been going to doctors for years and I have not been getting any help. They think it has to do with the nerves in my neck and if I rest it it will go away by itself. This is not happening, it is not going away with rest and in fact my problem is getting worse. My new set of doctors want to give me a lot of medications. Some are the same ones that I have had before. Now they want to increase my doses so these medications can “do some good.” I am not convinced of that.

My tongue feels numb all the time but there is “nothing wrong with me.”

My tongue feels numb all the time. I also have neck pain and headaches. I have seen regular doctors, ENT doctors, neurologists , chiropractors, herbalists, and others. I have a lot of MRIs and CT scans that say nothing is wrong with me.

An excess of saliva and tongue numbness

I have a problems with excess saliva and a numb tongue. I have been to one specialist after another and and they tell me my saliva glands are fine it must be something else. No one has been able to tell me what “something else is.”

I have neck pain, so my doctors think some of my symptoms have something to do with my neck

I have so many problems, but I feel that everything going on with me has something to do with my neck. I have neck pain that is chronic and severe at times. When it is more severe I get worsening symptoms of my other problems. I have difficulty swallowing, my vision is blurryear fullness and a sensation that it is field with liquid, I have blood pressure spikes, digestive problems, and more. I have seen a cardiologist, an ophthalmologist, and a gastroenterologist, all on the recommendations of my doctor and a neurologist that I must have some time of nerve damage or dysfunction or a pinched nerve in my neck. I have an MRI that show slight to moderate disc disease in C1-C2.

Neck-Tongue syndrome has been classified into two categories:

  • Complicated neck-tongue syndrome consists of those cases where there is the presence of an underlying disease process, such as degeneration or inflammatory pathology.
  • Uncomplicated neck-tongue syndrome is trauma related or idiopathic (it develops for no apparent reason).

“. . . why patients with neck problems walk around for years without hope or optimism that their problems can be solved”

Other papers besides the research listed above isolated problems of Neck-Tongue Syndrome to problems of cervical neck instability caused by loose and weak cervical ligaments and loose, hypermobile, cervical vertebrae. In my article on cervical neck instability I write:

“The concept of ligament laxity or cervical neck instability being caused by ligament damage is not so simple for doctors to understand. This may be why patients with neck problems walk around for years without hope or optimism that their problems can be solved.” 


Early in 2018, doctors at the University of California, San Francisco (UCSF) Pediatric Headache division and Child Neurology division, teamed with doctors at Boston Children’s Hospital, the University of California, Davis, Department of Neurology and Pain Management Department, researchers from the University of Newcastle, Australia and researchers at  King’s College London, London. What they were looking for were answers to Neck-Tongue Syndrome. What they found was something we have long written about. The problem these patients are challenged with may be treated by addressing supportive structure ligament weakness in the neck and jaw.

In a paper published in Cephalalgia: An International Journal of Headache, (2) these researchers made these observations:

  • Neck-Tongue syndrome (NTS) is characterized by brief attacks of neck or occipital pain (the lower back of the head upper cervical neck region), or both, brought out by abrupt head turning and accompanied by ipsilateral tongue symptoms.

The researchers note 39 case histories

  • There were 39 primary cases investigated:
    • 56% were female.
    • Average age at onset was 16 (12 youngest) years.
    • Twenty (53%) experienced neck pain,
    • seven (18%) occipital pain,
    • and 11 (29%) both.
    • Pain was most often sharp or stabbing and severe, lasting several seconds to several minutes.
    • Eleven experienced numbness and/or tingling in the neck/occiput following the pain.
    • Thirty-six had an accompanying tongue sensory disturbance and three a motor/posture disturbance; five had both.
    • Thirteen had other headaches, and four a family history of Neck-Tongue syndrome.
  • Conclusions: Neck-Tongue syndrome typically has a pediatric or adolescent onset, suggesting that ligamentous laxity during growth and development may facilitate transient subluxation of the lateral atlantoaxial joint with sudden head turning.
    • “ligamentous laxity during growth and development may facilitate transient subluxation of the lateral atlantoaxial joint with sudden head turning.” 
      • What does this mean? Underdeveloped weakened ligaments cause dislocations.
      • “Atlantoaxial joint instability is the abnormal, excessive movement of the joint between the atlas (C1) and axis (C2) vertebrae in the cervical neck. This junction is a unique junction in the cervical spine as the C1 and C2 are not shaped like cervical vertebrae. They are more flattened so as to serve as a platform to hold the head up. The bundles of ligaments are strong bands that provide strength and stability while allowing the flexibility of head movement and to allow unimpeded access of blood vessels that travel through them to the brain. To make the connection between Atlantoaxial instability and Neck-Tongue Syndrome, please see my article on Atlantoaxial instability.

Lastly, these researchers suggested that Neck-Tongue syndrome should be re-instated in the International Classification of Headache Disorders. A guide for treatments for various disorders causing headaches. Neck-Tongue syndrome has been removed from this index for doctors.

Discovering treatment options

The seeming rarity of this disorder as lead to numerous studies published in the medical literature describing the patient’s condition and symptom management

In April 2018 doctors in Ireland reported in the Journal of Child Neurology (3) three cases:

  • The authors describe 2 girls and 1 boy, with neck-tongue syndrome.
  • In each child additional headache symptoms occurred, headache improved over time in all, spontaneously in 2 and coinciding with gabapentin (a nerve pain medication and anticonvulsant) treatment in the other.

In the Journal of Chiropractic Medicine, (4) a case of a 34-year-old female patient who sought treatment at a chiropractic clinic for symptoms involving neck pain associated with left-sided paresthesia of the tongue that had persisted for more than two 2 years.

  • The patient was treated with spinal manipulation, myofascial release, and home exercises. After 2 weeks, she was symptom-free. At the 2-year follow-up, the patient remained free of symptoms.

A case in The Journal of Orthopaedic and Sports Physical Therapy: (5)

  • The patient was a 13-year-old girl who reported insidious or the slowly developing onset of sharp pain in the neck, numbness/tingling of the tongue/face, and tinnitus with cervical rotation. This all occurred on the same side of her head, face and neck.
  • Symptoms occurred several times a week for approximately 10 seconds.
  • Examination revealed impaired function, increased forward head posture, decreased cervical range of motion, and positive neurodynamic assessment. The patient’s treatment included manual therapy and exercise for postural stabilization.

OUTCOMES:

  • Following 8 visits, pain of the neck and tongue numbness had resolved. This case report describes the physical therapy management of an individual with neck-tongue syndrome. The management strategy followed a protocol similar to that used for cervicogenic headaches, due to the involvement of the upper cervical spine with both neck-tongue syndrome and cervicogenic headache and the lack of evidence for the treatment of neck-tongue syndrome.

NOTE: some of the key points to look at in this research. The main treatment was physical therapy to strengthen the muscular in the cervical spine. This had some positive effect. The physical therapy was given in a way that people with cervicogenic headaches. These would be high-intensity multi-directional exercises.

What the therapists came upon here is that the key to neck-tongue syndrome may be in strengthening the neck.

Below what we will discuss strengthening the cervical neck structure with Prolotherapy injections into the cervical region that has been shown to work on its own in relieving patient symptoms.

Do cervical collars help?

We are going to go back to 1984 and a study published in the Journal of Rheumatology.(6) Here researchers discussed the use of cervical neck collars to help stabilize the neck-tongue syndrome patient’s neck and alleviate symptoms.

  • Case 1 was initially diagnosed with having atypical migraines. Besides neck pain in the back of the neck, this patient experienced pain that radiated forward over the whole hemicranium (one side of the head) to the maxillary region of the face (sinuses, roof of the mouth) and periorbitally (around the eyes). Exam showed a loss of joint space (degeneartive joint disease at C1-C2) at the left lateral atlantoaxial joint with sclerosis. A cervical collar worn continuously for 8 months was said to eliminate the symptoms.
  • Case 2 described their pain as suboccipital neck pain radiating to the occiput and side of the head, jaw, anterior neck, and tongue. These symptoms were induced by virtually any neck movement, even nodding. Exam showed mild scoliosis at all levels, with secondary spondylosis. Moderate degenerative changes were noted from C1-C4. Posture control, isometric neck exercises, and use of cervical collar x 8 months reportedly controlled the symptoms.
  • Case 3 had symptoms of left-sided neck pain radiating to the occiput, with left-sided numbness of the tongue. This only occurred when rotating the head while swimming. Exam showed normal cervical spine. This patient was noted to have instability of the atlantoaxial facets during rotation. (See atlantoaxial instability)
  • Case 4 had a cervical fusion surgery. Sharp movements of the neck caused abnormal sensations on the left side of the neck, head, and tongue. Exam showed degenerative changes at C4-7. Symptoms were reportedly completely prevented with a cervical collar.

At our clinics, our patients discuss the use of cervical collars to help alleviate symptoms until Prolotherapy treatments have induced repair and strength to the cervical region.

Numb tongue, burning mouth, and other tongue pain from nerve impairment due to cervical instability

Ross Hauser, MD and Brian Hutcheson, DC discuss the nerves in the neck and face that affect tongue feeling and function, and when staying in prolonged positions can impair the nerves. The cervical instability one can experience during various movements and positions can cause painful symptoms like burning mouth or numb tongue, and difficulty speaking or moving the tongue.

In many cases of Burning Mouth Syndrome or numb tongue we would recommend a tag-team approach of Prolotherapy injections to strengthen the cervical ligaments to help restore cervical spine stability, and cervical curve realignment therapy through the use of specialized chiropractic care.

In almost all the cases of Burning Mouth Syndrome or numb tongue we have seen at Caring Medical, there has been some kind of dental work involved. Whether it’s a wisdom teeth being pulled or a crown or a cavity.

  • The upper cervical nerves, the C1, C2, C3 have connections to the hypoglossal nerve, the hypoglossal nerve controls the motion of the tongue.
  • The upper cervical nerves, the C1, C2, C3 have connections to the trigeminal nerve which is the nerve that helps controls the muscles of the face and sensation that connects to the upper cervical in the spinal cord right
  • The upper cervical nerves, the C1, C2, C3 have connections to the chorda tympani which is a branch of the facial nerve  that influences sensation and taste in the tongue

Burning tongue / Numb Tongue Syndrome

Problems with these nerves and cervical spine instability can also cause problems of  Numb Tongue Syndrome where half or more than half of the tongue feels numb tongue and often that occurs with motion.

If you have a tongue issue whether it’s numbness whether it’s pain, if you have difficulty moving it, you have already been to a neurologist in you’re not good results what can be an answer?

We can  sometimes find that under certain motion of the neck, as pointed out, loss of tongue sensation with movement, we find under examination that motion of the cervical spine is causing nerve irritation that is impacting the tongue function.

The basic message, if you get rid of the irritation of the C1 or C2 nerve roots by positional changes of the cervical vertebrae, or a diagnostic nerve block, and this alleviates your problems. Then a further exploration of your burning mouth and tongue problems and it cervical spine connection should explored.

A person with instability of the upper cervical spine, or C1-C2 (atlanto-axial) instability, a rapid rotation of the head can cause the symptoms of neck-tongue syndrome.  Although such treatments as utilizing a cervical collar, performing isometric neck exercises, and posture control, are important modalities in C1-C2 instability, they do not treat the root of the problem of neck-tongue syndrome.  They also provide only temporary relief.

It is our opinion that stabilization of the atlantoaxial facets is what is necessary to resolve neck-tongue syndrome. A more permanent solution option to consider is Prolotherapy. These regenerative injections directed at the weakened ligaments can stimulate repair of the subluxed, unstable atlantoaxial areas. Prolotherapy can help the symptoms of neck-tongue syndrome by stabilizing the excessive movement at the atlantoaxial facets.

Prolotherapy injections for Atlantoaxial instability

In 2015, Caring Medical published findings in the European Journal of Preventive Medicine investigating the role of Prolotherapy in the reduction of pain and symptoms associated with increased cervical intervertebral motion, structural deformity, and irritation of nerve roots.

Twenty-one study participants were selected from patients seen for the primary complaint of neck pain. Following a series of Prolotherapy injections, patient-reported assessments were measured using questionnaire data, including range of motion (ROM), crunching, stiffness, pain level, numbness, and exercise ability, between 1 and 39 months post-treatment (average = 24 months).

  • Ninety-five percent of patients reported that Prolotherapy met their expectations in regards to pain relief and functionality. Significant reductions in pain at rest, during normal activity, and during exercise were reported.
  • Eighty-six percent of patients reported overall sustained improvement, while 33 percent reported complete functional recovery.
  • Thirty-one percent of patients reported complete relief of all recorded symptoms. No adverse events were reported.

We concluded that statistically significant reductions in pain and functionality, indicating the safety and viability of Prolotherapy for cervical spine instability.(7)

Treatment of Neck-Tongue Syndrome at Caring Medical begins with a simple email to tell us about your pain challenges and your medical history. We will discuss if you are a candidate for our treatments. Get help and information from our Caring Medical staff.

1 Chu EC, Lin AF. Neck–tongue syndrome. BMJ Case Reports CP. 2018 Nov 1;11(1). [Google Scholar]
2 Gelfand AA, Johnson H, Lenaerts ME, Litwin JR, De Mesa C, Bogduk N, Goadsby PJ. Neck-tongue syndrome: a systematic review. Cephalalgia. 2018 Feb;38(2):374-82. [Google Scholar]
3Allen NM, Dafsari HS, Wraige E, Jungbluth H. Neck-Tongue Syndrome: An Underrecognized Childhood Onset Cephalalgia. Journal of child neurology. 2018 Apr;33(5):347-50. [Google Scholar]
4 Roberts CS. Chiropractic Management of a Patient With Neck-Tongue Syndrome: A Case Report. Journal of chiropractic medicine. 2016 Dec 1;15(4):321-4. [Google Scholar]
5 Niethamer L, Myers R. Manual therapy and exercise for a patient with neck-tongue syndrome: a case report. journal of orthopaedic & sports physical therapy. 2016 Mar;46(3):217-24. [Google Scholar]
6 Webb J, March L, Tyndall A. The neck-tongue syndrome: occurrence with cervical arthritis as well as normals. The Journal of rheumatology. 1984 Aug;11(4):530-3. [Google Scholar]
7 Hauser R, Steilen D, Gordin K The Biology of Prolotherapy and Its Application in Clinical Cervical Spine Instability and Chronic Neck Pain: A Retrospective Study. European Journal of Preventive Medicine. Vol. 3, No. 4, 2015, pp. 85-102. doi: 10.11648/j.ejpm.20150304.11

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