Re: Head and Neck Pain (diagnosis but no one will treat)

Posted By CCF Neurology MD on September 20, 1997 at 23:38:17:

In Reply to: Head and Neck Pain (diagnosis but no one will treat) posted by Don Mikulec on September 05, 1997 at 18:12:37:







: Four generations of males in my family have suffered from left sided
head and neck pain.  After going to dozens of doctors and specialists,
my Dad received a diagnosis of Eagle Syndrome/Stylohyoid Syndrome.
It's a very rare condition that causes the stylohyoid ligament and
the carotid artery to run afoul and trigger pain in the 5th and other
cranial nerves as well as giving a senation of throat pain, difficulty
swallowing, ear pain, tinitus, and headache along the affected side.
Other symptoms can also include sinusitis, difficulty speaking, and
irritation of the sympathetic nerve plexus around the carotid.  
In some people, this problem is triggered by a tonsilectomy.
My Dad has a diagnosis from a pain clinic, but no surgeon wants to
do the operation, even though the surgery text books say the operation is
simple.
I have the symptoms too but here's my problem.  An oral surgeon won't
go in unless I see a neurologist.  The neurologist doesn't believe
the diagnosis because he has never heard of the problem.  He is trying
to put me on anti-convulsants for the pain.  When I explained the
problem to the neurologist, he ordered an MRI/MRA and told them to
look for a "lump".  They found no lump and said everything is normal.  
What everyone fails to understand is that this problem causes swelling
and inflammation at the base of the skull/upper neck.  The inflammation
shows up on the MRI, but the radiologist doesn't comment on it.
What I would like to know, is ......
1) Has anyone besides me heard of or researched Eagles Syndrome?
2) Does anyone know of a surgeon who will treat the problem?
Thanks.





Dear Don:
Your description of Eagle's syndrome is quite precise. I did not, however, know that it ran in families.
I have not seen a case, nor have some of my colleagues.
The most research on this syndrome is done by otorhinolarngologists. They are also the most familiar with this under-recognised as well as rare condition.
Otorhinolaryngologists at the Cleveland Clinic have experience in the diagnosis and treatment of this condition, and I suggest that you consult with them to seek a solution to your problem, in case you live near Cleveland.
The number to call for appointments is [phone], or [phone] locally.
Good luck!