I am new to the blog. I'm looking for not only support but also education about ES. I was diagnosed two years ago. At that time the CT scan of my neck tissue showed a 2.6 cm right stylomandibular ligament that is calcified with a 1.6 on the left. I was told I was just a few millimeters away from the classic diagnosis. Now two years later the pain on the right side of my tongue (my only symptom) has increased dramatically often bringing me to tears when I eat or drink.
I am having a lot of trouble understanding this diagnosis and finding the expertise in Oklahoma is nearly impossible. I have seen a neurologist and an oral surgeon who recommended surgery.
Is there anyone out there with this particular symptom that can maybe help me understand?
The electric, sharp pain you describe sounds like it could be from a nerve. Perhaps the ligaments are compressing a nerve to the tongue? The styloid processes have attachments going from them to the tongue- I found moving my tongue was very painful which has been helped by surgery. If it is nerve pain it could perhaps be helped by some of the medications suited to that e.g. Gabentin, Neurontin, Lyrica, Amitriptyline.
Have you looked at the doctors list- is there anyone near who could help you?
Thanks for the quick response. I failed to mention that I took Neurontin for about a year or so but quit because 1) I still had pain and 2) it made me very "loopy" even a reduced dosage. Unfortunately when I stopped I hardly noticed any difference at all. The pain has gone dormant at times but it's been increasing dramatically over the last few months.
Can you explain the styloid processes? It is my understanding that the calcification on the ligament is what's pressing onto the glossopharyngeal nerve which is what's causing the pain in my tongue.
I have looked at the list of doctors and would consider going to see any of those that come highly recommended but yet is also on my insurance.
The styloid processes are small, bony processes which are at the base of the skull. Tendons are attached to the styloid processes which go to the tongue. The average length of the styloid process is about 3cms- but don't quote me on that- there are research papers which go into detail about the 'average' length, and it does vary with different doctors what length they consider to be long enough to warrant surgery! (Heidemt has read up a lot on this, and I hope perhaps we can put some research on the site). The stylo-hyoid ligaments are ligaments which go from the styloid process to the hyoid bone, and they can get calcified and then press on blood vessels or nerves.
So Eagles Syndrome can be caused either by elongated styloid processes, or by calcified ligaments, or both. The length and angle of the process can vary alot, or the amount of calcification of the ligaments, so you can see why there can be a variation of symptoms.
With the medication, it might be worth trying a different one, or a combination- they can affect different people in different ways.
I had my first ES surgery last Nov. on the right side. My surgeon chose to do that side first as the angle it was growing seemed to him to be more invasive. It was very thick & growing more straight down whereas my left side was curving in toward my hyoid bone & was more at the surface. What the surgeon discovered during surgery was that my glossopharyngeal nerve was wrapped tightly around my right styloid process. He had to unwrap it a bit to be able to shorten the styloid & remove the S-H ligament. Prior to surgery I had no tongue problems. Post op the right side of my tongue was paralyzed (not numb - just no motor function) for several months because of the trauma to the nerve during surgery (I was warned this would be the case when I awoke from the anesthesia). It has returned to mostly full function now. A week post op, I developed First Bite Syndrome which is not an uncommon side effect of neck surgeries in the submandibular area. FBS shows up when you take your first several bites of food and in my case caused the jaw muscles on the right side of my face go into spasm along w/ my parotid gland (sits behind your jawbone just under your ear). This pain would literally take my breath away & cause an adrenaline surge in my body. My family thought it was funny to see me hopping around the kitchen grabbing my jaw while saying, "OW! OW! OW!" but it wasn't so funny to me. It sounds like your tongue pain may be some relative of FBS. I still have this problem but thankfully it is greatly reduced from its initial form.
Last week, I had my second surgery which removed my left styloid and ligament. So far I haven't developed FBS on the left side. Interestingly, though my left styloid was at a shallower angle, it ended up pressing on the back of my throat where my tongue attaches, & it caused some more speech problems and a feeling like the back of my tongue wasn't working. I am now 7 days post op and am happy to say that this problem though not completely gone is better than it was. I anticipate that once all my post surgical swelling is gone, my tongue will be back to normal.
I hope this info is helpful and offers a bit of an explanation as to what could be happening to you. Jules was a bit more succinct in her explanation, but it is true the GPN (glossopharyngeal nerve) can tangle w/ an elongated styloid process or calcified stylohyoid ligament or both & give the symptoms you're experiencing.
Wow, you have been through a lot. I hope you continue to heal with no symptoms.
I will look into FBS as I too have spasms sometimes on the right side of my check when my tongue is hurting. I also experience that kind of pain that produces adrenaline. I get hot, my heart beats fast and sometimes my eyes water. When I explain this to my family they look at me like I'm crazy. When the pain subsides, usually after a couple of seconds, I feel so much relief and almost a cooling type sensation.
May I ask what state you live in and the name of the doctor who has performed your surgeries? Would you recommend him? The resources for ES doctors is very little in Oklahoma. Isaiah 40:31 said:
Hi Kals!
I had my first ES surgery last Nov. on the right side. My surgeon chose to do that side first as the angle it was growing seemed to him to be more invasive. It was very thick & growing more straight down whereas my left side was curving in toward my hyoid bone & was more at the surface. What the surgeon discovered during surgery was that my glossopharyngeal nerve was wrapped tightly around my right styloid process. He had to unwrap it a bit to be able to shorten the styloid & remove the S-H ligament. Prior to surgery I had no tongue problems. Post op the right side of my tongue was paralyzed (not numb - just no motor function) for several months because of the trauma to the nerve during surgery (I was warned this would be the case when I awoke from the anesthesia). It has returned to mostly full function now. A week post op, I developed First Bite Syndrome which is not an uncommon side effect of neck surgeries in the submandibular area. FBS shows up when you take your first several bites of food and in my case caused the jaw muscles on the right side of my face go into spasm along w/ my parotid gland (sits behind your jawbone just under your ear). This pain would literally take my breath away & cause an adrenaline surge in my body. My family thought it was funny to see me hopping around the kitchen grabbing my jaw while saying, "OW! OW! OW!" but it wasn't so funny to me. It sounds like your tongue pain may be some relative of FBS. I still have this problem but thankfully it is greatly reduced from its initial form.
Last week, I had my second surgery which removed my left styloid and ligament. So far I haven't developed FBS on the left side. Interestingly, though my left styloid was at a shallower angle, it ended up pressing on the back of my throat where my tongue attaches, & it caused some more speech problems and a feeling like the back of my tongue wasn't working. I am now 7 days post op and am happy to say that this problem though not completely gone is better than it was. I anticipate that once all my post surgical swelling is gone, my tongue will be back to normal.
I hope this info is helpful and offers a bit of an explanation as to what could be happening to you. Jules was a bit more succinct in her explanation, but it is true the GPN (glossopharyngeal nerve) can tangle w/ an elongated styloid process or calcified stylohyoid ligament or both & give the symptoms you're experiencing.
It sounds like what you have is definitely FBS. I didn't mention it earlier, but I get the hot flashes, rapid heartbeat as well. I live in California in Silicon Valley area. Dr. Samji was my surgeon. He has offices in San Jose and Palo Alto (near Stanford Hospital). A number of people from this site have traveled long distances to see him. He's a great surgeon and compassionate doctor.
Kals said:
Wow, you have been through a lot. I hope you continue to heal with no symptoms.
I will look into FBS as I too have spasms sometimes on the right side of my check when my tongue is hurting. I also experience that kind of pain that produces adrenaline. I get hot, my heart beats fast and sometimes my eyes water. When I explain this to my family they look at me like I'm crazy. When the pain subsides, usually after a couple of seconds, I feel so much relief and almost a cooling type sensation.
May I ask what state you live in and the name of the doctor who has performed your surgeries? Would you recommend him? The resources for ES doctors is very little in Oklahoma. Isaiah 40:31 said:
Hi Kals!
I had my first ES surgery last Nov. on the right side. My surgeon chose to do that side first as the angle it was growing seemed to him to be more invasive. It was very thick & growing more straight down whereas my left side was curving in toward my hyoid bone & was more at the surface. What the surgeon discovered during surgery was that my glossopharyngeal nerve was wrapped tightly around my right styloid process. He had to unwrap it a bit to be able to shorten the styloid & remove the S-H ligament. Prior to surgery I had no tongue problems. Post op the right side of my tongue was paralyzed (not numb - just no motor function) for several months because of the trauma to the nerve during surgery (I was warned this would be the case when I awoke from the anesthesia). It has returned to mostly full function now. A week post op, I developed First Bite Syndrome which is not an uncommon side effect of neck surgeries in the submandibular area. FBS shows up when you take your first several bites of food and in my case caused the jaw muscles on the right side of my face go into spasm along w/ my parotid gland (sits behind your jawbone just under your ear). This pain would literally take my breath away & cause an adrenaline surge in my body. My family thought it was funny to see me hopping around the kitchen grabbing my jaw while saying, "OW! OW! OW!" but it wasn't so funny to me. It sounds like your tongue pain may be some relative of FBS. I still have this problem but thankfully it is greatly reduced from its initial form.
Last week, I had my second surgery which removed my left styloid and ligament. So far I haven't developed FBS on the left side. Interestingly, though my left styloid was at a shallower angle, it ended up pressing on the back of my throat where my tongue attaches, & it caused some more speech problems and a feeling like the back of my tongue wasn't working. I am now 7 days post op and am happy to say that this problem though not completely gone is better than it was. I anticipate that once all my post surgical swelling is gone, my tongue will be back to normal.
I hope this info is helpful and offers a bit of an explanation as to what could be happening to you. Jules was a bit more succinct in her explanation, but it is true the GPN (glossopharyngeal nerve) can tangle w/ an elongated styloid process or calcified stylohyoid ligament or both & give the symptoms you're experiencing.