“What the heck is that, I‘ve never heard of that”? I was talking with Cheslea at the BC Winter Games a few weeks ago and I asked her if she had heard of neck-tongue syndrome. That was her response. It is a common response, not that I ask about neck-tongue syndrome all the time. This blog post is related to my last post about different types of headaches.
Neck-tongue syndrome is one of those things that I did not know anything about until I moved out to Halifax. I was studying for my Advanced Diploma of Manual and Manipulative Therapy exam, formerly known as the Part B exam, and one of my study partners was Michael Ritchie. He was the former president of IFOMPT, International Federation of Manual Physical Therapists, the world governing body. He graduated from Dalhousie University in the early 1980’s. I believe he did finished his Part B exam in 1985 but I could be wrong. When we would have our little study sessions, usually after work, he would ask me about all different types of diseases. He asked me about neck-tongue syndrome and I am pretty sure I told him that he was making it up. He showed me Grieve’s Modern Manual Therapy, a classic textbook of physiotherapy, and there it was. I think it was about one paragraph. Michael went on about neck-tongue syndrome some different explanations for it. And then I asked him the question, “how many of these have you seen”. His response was very succinct, “none”.
We worked together for a couple of years and one day it happened! A client with neck-tongue syndrome walked through the door. The client was from rural Nova Scotia and we seeing a doctor in Halifax for something. He complained about certain symptoms and was referred to Michael. It was kind of weird. Michael brought me into the room and the gentleman demonstrated how he got his pain, which was turning his head and described his sensation. Michael was elated. Then we had a brainstorming session about how we should go about treating this gentleman. That has been my experience with neck-tongue syndrome, until recently.
I was asked to help assist on a Level 2 Upper course in Vancouver in early 2016. The instructor, Christine, asked if I would like to teach something. We agreed on a lecture on headaches. We went through the list of things to teach and one line in her email read something like this “and don’t forget about neck-tongue syndrome”. I thought she was joking but she wasn’t. Then about a week later, JOSPT, came out with an article about neck-tongue syndrome. This article is where I am getting the majority of the story below. Very interesting…
Neck-tongue syndrome is when someone rotates their head to one side, usually associated with neck pain, and the ipsilateral (same) side of the tongue becomes numb. For example, if I turned my head to the left, I would get a pain in the left side of the my neck and the left side of my tongue would go numb or the sensation of my tongue would change.
There are other symptoms that may come with neck-tongue. Some of them are: sensation of choking, numbness behind the ear, paralysis of the tongue, excessive salivation, dysarthria, jaw pain, and ear pressure.
The cause of neck-tongue syndrome is thought to be relationship of the C1-2 joint, aka AA joint, to the C2 nerve, the lingual or hypoglossal nerves. Let me do the best I can to explain, as it could be wrong (nobody is completely sure). Possibly a one sided C1-2 subluxation, joint is not moving property, or swelling in the C1-2 joint capsule puts pressure on the C2 nerve. Depending which part of the C2 nerve, can cause numbness from the proprioceptive (body awareness, basically) nerve fibers from the lingual nerve to the hypoglossal nerve. These nerves go to, you guessed it, the tongue.
In total there have been about 50 cases of neck-tongue syndrome including approximately 25 adolescents, in the literature. There is an equal number of either sex and left/right hand dominate. In addition, people that have been diagnosed with neck-tongue syndrome have been active in a number of different sports.
Neck-tongue syndrome was divided, back in 2004, into two categories. Uncomplicated and complicated neck-tongue syndrome. Uncomplicated neck-tongue syndrome seems to start idiopathically or associated with some sort of trauma. Whereas complicated neck-tongue syndrome are those people that already have some sort of disease. For example, rheumatoid arthritis, ankylosing spondylitis, congenital (born with it) anomalies like Chiari-1 malformation, ligamentous laxity amongst other things.
Neck-tongue syndrome can be confused with many other diagnoses. For example, vertebrobasilar insufficiency or carotid artery insufficiency, migraine, upper cervical instability, transient ischemic attack to name a few. Why is it important to get the diagnosis correct? To give the correct treatment, you do not want to misdiagnosis something and give a treatment that may be harmful to the client, i.e. spinal manipulation/ adjustment.
Some treatments for this syndrome can include medications (I am not a pharmacist, if you need to talk to one, try Curtis at Revolution Pharmacy or your doctor about the medications) such as the ones used to treat neuropathic pain i.e. gabapentin. In addition, NSAID’s (non steroidal anti-inflammatory drug), muscle relaxants, local injections of anesthetics and steroids, surgery, manual therapy, exercise (the small muscles in the neck) and education.
This disease/syndrome is very rare about 0.22% of the population.
Neck-tongue syndrome is listed on the International Headache Society page, with some diagnostic criteria.
I have seen neck-tongue syndrome once in my career. I am not sure I will see another one. It is definitely not a common disease and not a commonly talked about disease.
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