Hello all. I am new to this site, but I have gotten a lot of great information from it already. We used the spreadsheet to find 2 doctors in our area. One we have already seen one & we have an appointment to see the other one at the end of June. After reading some of the discussions on here, I see that my frustration is shared with all. Here is my son's story:
My son had his adenoids removed in 2008. Since that surgery, he developed and has been diagnosed with Palatal Myoclonus (PM) and has suffered with severe, debilitating ear pain in addition to the clicking from PM. Then beginning in 2012 the developed severe throat pain and intermittent foreign object sensation. His pain is bi-lateral. He is in pain everyday and the pain varies in intensity throughout the day. His pain spikes every time he eats. Sometimes he has pain in his neck and jaw too. Sometimes he gets headaches. Sometimes his throat pain is so bad he can't speak. He describes his throat pain as "sandpaper" and his ear pain and sometimes the throat pain as "daggers or electricity". We have seen so many doctors (neurologists, ENTs, neurosurgeons) most telling me they couldn't help us or that my child needed a psychiatrist, but I know my own child. His problem is physical - not psychological and there had to be an answer. Anyway, he has been so debilitated over the years from his pain that he cannot attend school, cannot read, cannot function. I am a mother on a mission. I learned about glossopharyngeal neuralgia (GPN) from another PM person and in my research on neuralgias I stumbled across Eagles syndrome. I requested a 3D CT scan and was told that there is no specialized equipment to do that, it is a regular CT scan and then the view is changed to look 3D. Anyway, we did 2 CT scans. The first doctor ordered one that didn't go far down enough into the neck area so we had to do a second one. Now we have been given the information: the children's hospital told us he does have elongated styloid processes on both sides, at 31mm or 3.1 cm. There is no one with experience at our children's hospital so we went to see Dr. Jason Newman (whose name we got from the spreadsheet on this site). HIs radiologist told us my son doesn't qualify as Eagles because the styloid didn't exceed 3cm & wasn't long enough. Apparently his measurement was just a slight bit different than the first radiologist. However, that is the criteria for an adult and I have read that children's are a little smaller and the length doesn't always correlate to the amount of pain. He does indeed have calcification of the styloid process on both sides and he did indeed have ortho-pharyngeal surgery. I have read numerous medical papers on the topic (obtained through my pediatrician). I do believe he has Eagles, but due to his PM and GPN, the doctor said there is no way he has all 3. So, we are back to square one. Ear pain and throat pain could be GPN or Eagles but all the literature says that Eagles is often misdiagnosed as GPN. But since the doctor dismissed my son as not qualifying as Eagles, we are going to try microvascular decompression surgery of the glossopharyngeal nerve. But that doesn't explain why he is bi-lateral and I am still stuck on this Eagles as a cause. I also believe that the PM is caused by either the GPN or Eagles. Looking for information...
My questions are: 1. Any mothers with children with Eagles on this site? (There is almost no data on the normal length of the styloid process for children) Or has anyone ever read anything about children and Eagles?
2. Is there anyone on here like my son whose major complaints are ear pain and throat pain? If yes, did you ever have ear pain without throat pain?
3. Has anyone had a styloidectomy on a styloid process that was just around 3cm (30 mm) & got relief?
Thanks and happy to have this site as a resource on our journey.
I hope you get the second opinion before the Microvascular decompression surgery. That sounds very alarming. How old is your son? If he is small, it seems that 3.1 would be long for a child. It surprises me that he has a calcified styloid at a young age. I hope someone else has some information to help.
Also, Deleone a member on this site had MVD surgery on the glossopharnygeal nerve. You might want to seek him out before going that route. I am so sorry that your son is suffering so.
We have an appointment with Dr. Cognetti, but he is the one who can't see us until the end of June. That is a very long time to wait for him. I was told to call daily for cancelations so I will do my best to stay on top of it. I got his name off of this site too. Thank you!
We have a second opinion with Dr. Kenneth Casey who has worked with the doctor who created the procedure known as MVD (or the Janetta procedure). He wrote the book on it. He is in Michigan and we are going in a few weeks. My son is 12 now but he has been suffering with these symptoms for almost 5 years. It has been a difficult and sometimes horrific childhood for him. We do the best we can to make each day count as special in some small way. I tell him that every day is a gift and we try to do the best we can to enjoy it. Thank God for the Internet or I wouldn't have any of this information. The doctors just wrote us off.
emma said:
I hope you get the second opinion before the Microvascular decompression surgery. That sounds very alarming. How old is your son? If he is small, it seems that 3.1 would be long for a child. It surprises me that he has a calcified styloid at a young age. I hope someone else has some information to help.
Also, Deleone a member on this site had MVD surgery on the glossopharnygeal nerve. You might want to seek him out before going that route. I am so sorry that your son is suffering so.
Maybe if I waited 8-20 years then his styloid process would be elongated enough for them to take notice. Just kidding...I can't believe how long some of you went without a diagnosis. I read the survey monkey results and that was very informative. I have learned that once the styloid starts calcifying it can continue to do so if left unchecked. Maybe that is why adult's styloid processes are so long by the time they get diagnosed and have lived with symptoms for so many years. I feel for all of you on this site. I know first hand how debilitating this condition can be.
I do hope that your son gets relief soon. It is bad for adults, but it is horrible to rid a child of his childhood. We have members who were in their late teens and moms with little children suffering. I feel for everyone who has to live with this pain. Praying for more science and more surgeons and the best of techniques to be developed to help people with rare diseases of all kinds.
Thank you Emma for that information. I really need to find a way to communicate with those moms/teens. I will start a new discussion and see if I can get their attention. I need to know how long their styloid processes were and if they had successful styloidectomys. That information is so incredibly valuable to me.
emma said:
I do hope that your son gets relief soon. It is bad for adults, but it is horrible to rid a child of his childhood. We have members who were in their late teens and moms with little children suffering. I feel for everyone who has to live with this pain. Praying for more science and more surgeons and the best of techniques to be developed to help people with rare diseases of all kinds.
I have ES with no throat pain. I have weird sensory issues with my hearing and sounds. Constant ear pain. Constant tooth ache where I have no teeth. It is so sad that your child is suffering. I hope you would be able to go to Mayo Clinic or some really good place. MVD surgery is something they considered for me but the surgeon was unsure because that does not cure ES. . Thankful bc I just after four years got Diagnosis. This is such a rare syndrome that Im not sure if there is even a children s specialist. I wish you God's blessings! Keep us posted. Sounds so frustrating and lots going on..
Ear Mom, I posted on one of you different questions earlier, but I just found this discussion. My symptoms at first were pain stabbing in the left back of throat. I also had a burning fire poker sensation deep within my ear. Headaches, some dizziness and nausea. I still have all of these symptoms, just not all at once. I also have learned to control some of them as I wait for the doctors, my surgery is scheduled for June 27th. Ice packs help my throat to calm down when it's "jumping" and "vibrating" Good luck to you and your son.
Thank you So Done and lizajane for your comments. My son does have issues with sounds, especially loud noises and yes, constant ear pain. And he has experiences some dizzy moments but not recently. We did find a doctor who is willing to take out his styloids. We are waiting for a surgery date. I keep praying for complete and total healing...he has lost most of his childhood, but still has a great future ahead of him. lizajane, good luck with your surgery and please let us know how you are as you progress.