Ear Mom, have you tried a search on Google Scholar? I just tried it and saw a couple articles about Eagles in children - one was just 11 years old. I don't know if the whole articles were available, but even a short abstract might help convince someone. I keep thinking about your son and how incredibly awful this must be for him.
I am not familiar with Google Scholar...I will try to get access to it. I really need that information on children since my son is 31 on both sides and I have been dismissed by so many doctors. You and alaska eagle - can't thank you both enough! I read all of those articles & as a result, something clicked for me. My son got Botox several times to try to help with the pain and clicking from PM. One of those times, he was not put to sleep, but given a spray that made it hard for him to swallow. But when we left, he felt great right away. I told him that the Botox doesn't work that quickly. His pain was gone for a few days but then it came back. After reading those articles, I am going to call that doctor and see what they sprayed into his throat. Perhaps it was a blocker as described in the articles and that is why he had temporary pain relief. I am very thrilled to have this new piece of information that would support that he does in fact have Eagles and GPN.
heidemt said:
Ear Mom, have you tried a search on Google Scholar? I just tried it and saw a couple articles about Eagles in children - one was just 11 years old. I don't know if the whole articles were available, but even a short abstract might help convince someone. I keep thinking about your son and how incredibly awful this must be for him.
I have found it very easy to find full text versions of journal articles through my local university library. No need for a card, membership or even to identify yourself. Link to the site is below - just put in 'Eagle Syndrome' and then notice all the ways you can refine your search. It is helpful to try sticking with the more recent research because they have learned so much more within the past 5-7 years. Hope this helps.
wow...there is a lot of information on that site, but unfortunately, I can't access any of it without a username and password. I will look into other library databases, but I haven't been to a university in many, many years. I don't think they let alumni use the library databases! (at least where I live). You are fortunate to have access to all of this. I did have my pediatrician get me some articles, but I don't want to ask him to get more. I think I have enough to approach our next doctor and sound intelligent when needed. All thanks to you, alaska eagle and heidemt. Will keep you posted as we progress.
Ear Mom,
Just had to share this. I found an abstract of an article that described how they were trying to test Eagles in children and measured 300 styloids and the mean was 10 mm. That would definitely show that your son's styloid is long.
http://www.sciencedirect.com/science/article/pii/003042208990265X
Ear Mom said:
wow...there is a lot of information on that site, but unfortunately, I can't access any of it without a username and password. I will look into other library databases, but I haven't been to a university in many, many years. I don't think they let alumni use the library databases! (at least where I live). You are fortunate to have access to all of this. I did have my pediatrician get me some articles, but I don't want to ask him to get more. I think I have enough to approach our next doctor and sound intelligent when needed. All thanks to you, alaska eagle and heidemt. Will keep you posted as we progress.
Heidemt!!!!! Thank you!!!! And to think that study was published in 1989! How could these doctors miss this information? I don't know how you found this article, but that is FANTASTIC! I wish I could see the whole article but the abstract definitely says it all. There aren't enough words for how moved and emotional I am that you guys have taken it upon yourselves to help me like this. You will make a difference in my son's future...I just know it. I am even going to send this abstract to the ENT at Penn for his own education...he should know too...and so should his radiologist. I thank God for you both - thank you for these blessings and I hope your good deeds come back to you ten fold with cherries on top!!! :)
heidemt said:
Ear Mom,
Just had to share this. I found an abstract of an article that described how they were trying to test Eagles in children and measured 300 styloids and the mean was 10 mm. That would definitely show that your son's styloid is long.
http://www.sciencedirect.com/science/article/pii/003042208990265X
Ear Mom said:wow...there is a lot of information on that site, but unfortunately, I can't access any of it without a username and password. I will look into other library databases, but I haven't been to a university in many, many years. I don't think they let alumni use the library databases! (at least where I live). You are fortunate to have access to all of this. I did have my pediatrician get me some articles, but I don't want to ask him to get more. I think I have enough to approach our next doctor and sound intelligent when needed. All thanks to you, alaska eagle and heidemt. Will keep you posted as we progress.
Ear Mom, you're very welcome. Happy to help. I've been to over 40 doctors for my unusual Eagles case and I know how frustrating it can be. I feel so bad for your son. I found the article using Google Scholar, which one of the 40+ doctors told me about.
I sent you a friend request. I wanted to mention something to you privately.
Ear Mom- 31 what mm? that is too long. my right one was that in 1989 and cause extreme pain until it was shortened to 1cm in 1990.
My left was about 60cm and was shortened to 3cm in 2003 with no change in symptoms. It was excised to 1 cm in 2013 and my symptoms are very reduced. But having the process rub against the nerve for 15 years probably caused nerve damage that might never go away.
Delaying surgery while begging for surgery might make elimination of symptoms impossible. The sooner it is removed the better. I know easier said then..........
As before, trying to get/find/convince a doctor to do the proper procedure is the most aggravating ES symptom. Doctors have lame excuses backed up by medical school.
Hi Heidemt ! The article you found shows cutting it back to 1cm is the best solution-make it the length it is supposed to be. Not the take a little off the tip idea. The tip doesn't hurt the throat.
Don't give up or in.
Keep charging forward.
shawn
Shaw - you may be confusing mm (millimeters) with cm (centimeters).
There are 10 mm in 1 cm. So, 31 mm is equivalent to 3.1 cm
Did you mean your left styloid was 60 mm (not cm)? 60 cm equals approximately 3 feet in length! Or, perhaps you meant 6 cm?
Hi; Alaska Eagle-I'm just confused and typed too fast and I don't proof read. Ask Heidemt.
I didn't see units to the "31" so wanted to clarify. I assumed mm but asked. I give my students less credit if they don't include units or wrong units of measure. oops, I failed me-I did what I say not to do: mixed units and screwed it up-I meant 6 cm to 7cm depending on the 2 previous failed surgeries.
yes, if it was 60cm and had to wait 15 years, we would call that extra bad-it was only 2.5 inches long. I mixed units again.
I will share this with my class-even adults make mistakes. They already know I do.
I hope you find a doctor for your son-I have a few Drs. in LA who I highly recommend. 2 out of 30 isn't so bad-is it? I had my share of dismissive doctors and got used to it and I developed an obtuse sense of humor about it. When my last Doctor said "well we will just have to take that out" I was shocked-was not ready for action.
One thing I had done that relieved the pain for 6 months was a direct injection nerve block of zylocane (sp) into the glossopharyngeal nerve. Which as it turned out can be a test for ES. If the pain goes away the nerve is being pressed by a foreign body-the Styloid. Had it done twice and the pain was gone but that's just a symptom.
shawn
Ear Mom,
I am truly moved by your story ~ and no doubt the story about your son.
I am less than 2 days into my discovery of ES. At first I thought, "oh yeah, neck abscess surgery - that is maybe how this all came to be"…….. but now, I am not so sure about that! That experience was when I was 19, and I am starting to become a believer that my ES suffering DID begin in childhood. Chronic sore throat and severe headaches go back to when I was 7 yrs. old at the latest.
I also had a horrible "pass out" type experience in which I lost my vision and my hearing. My head fell back and I lost my balance. My body began sprinting backwards to keep myself from falling, and after flying at least 50 yards, I did fall back. Luckily, my pony tail holder/bun is what smacked the concrete rather than my skull. Maybe that was ES related, too.
Anyways, your story really affects me in that I really wish that my parents were on my "team" about the problems I was having. My pain and my illnesses were always this perceived burden for them and they never really did much to validate my perceptions of things being/feeling "wrong" inside of me. I was suicidal in my childhood as well, and they emotionally shut me out instead of choosing to relate to me and my internal world which was: suffering.
I learned to doubt my pain/debilitating problems, and to take everything on as me needing to buck up and DEAL with life. I felt I needed to be fake and present as "strong" and I developed a false persona. I self-medicated with alcohol for a few years, then almost died, then began a slow but relatively insubstantial healing process which takes me to now ~ I am 32 and just now coming to grips with why my pain has been the way it has and I am some relieved…… FINALLY!
You are an absolute hero in my eyes! Talk about a tuned in and wise mother, standing up for her child and allowing IN his cries for help ~ coming back around to in turn be able to help him !!! Keep up the amazing parenting !!! I can imagine how hard it must be to have to watch your own child endure the pain and hardships of a rare syndrome like this, and I seriously applaud your abilities to be so present and your quest to acquire ALL the knowledge and appropriate medical assistance. Thank You for being You !!!
Hi Shawn. Thank you for reaching out and sharing your experience. To clarify, my son is 31 mm on each side (or 3.1cm on each side). However a 2nd radiologist read and measured it as 30mm (or 3 cm) and said it wasn't long enough to be Eagles. Of course, they discounted that he is a child and all his symptoms match except one. You mentioned that you have good doctors in CA and I will do ANYTHING to get my son's styloids removed completely to see if it helps him. He has no life and lives in constant agony living on codeine most days to survive. Please let me know who you were happy with. We are in NJ but at this point, I am going to reach out to the doctor in CA that has the most experience (Samij-if I spelled it right). I am also looking in Philadelphia and Boston to find someone who will listen and try this for us. I know there are no guarantees, but it makes the most sense, especially since my son has pain on both sides of his throat and in both ears. It is debilitating and we must try this avenue. It would be stupid for us to rule it out regardless that so far no one believes us that it is Eagles.
shaw said:
Ear Mom- 31 what mm? that is too long. my right one was that in 1989 and cause extreme pain until it was shortened to 1cm in 1990.
My left was about 60cm and was shortened to 3cm in 2003 with no change in symptoms. It was excised to 1 cm in 2013 and my symptoms are very reduced. But having the process rub against the nerve for 15 years probably caused nerve damage that might never go away.
Delaying surgery while begging for surgery might make elimination of symptoms impossible. The sooner it is removed the better. I know easier said then..........
As before, trying to get/find/convince a doctor to do the proper procedure is the most aggravating ES symptom. Doctors have lame excuses backed up by medical school.
Hi Heidemt ! The article you found shows cutting it back to 1cm is the best solution-make it the length it is supposed to be. Not the take a little off the tip idea. The tip doesn't hurt the throat.
Don't give up or in.
Keep charging forward.
shawn
Shawn - Was the nerve block sprayed directly into your throat or up into your nose? Or how was it administered? And what kind of doctor, an ENT? How long did the relief last? I am looking into that now.
shaw said:
Hi; Alaska Eagle-I'm just confused and typed too fast and I don't proof read. Ask Heidemt.
I didn't see units to the "31" so wanted to clarify. I assumed mm but asked. I give my students less credit if they don't include units or wrong units of measure. oops, I failed me-I did what I say not to do: mixed units and screwed it up-I meant 6 cm to 7cm depending on the 2 previous failed surgeries.
yes, if it was 60cm and had to wait 15 years, we would call that extra bad-it was only 2.5 inches long. I mixed units again.
I will share this with my class-even adults make mistakes. They already know I do.
I hope you find a doctor for your son-I have a few Drs. in LA who I highly recommend. 2 out of 30 isn't so bad-is it? I had my share of dismissive doctors and got used to it and I developed an obtuse sense of humor about it. When my last Doctor said "well we will just have to take that out" I was shocked-was not ready for action.
One thing I had done that relieved the pain for 6 months was a direct injection nerve block of zylocane (sp) into the glossopharyngeal nerve. Which as it turned out can be a test for ES. If the pain goes away the nerve is being pressed by a foreign body-the Styloid. Had it done twice and the pain was gone but that's just a symptom.
shawn
Thank you Jayde. You made me cry when I read your history. I know that the internet and social media (and my strong faith) are the only reasons I even have all the information for my son that I have today. Unfortunately, your parents probably didn't have the internet and resources that are available to us today. I only found GPN and Eagles through other people in the internet and in research in medical literature. All I know is that my son is completely debilitated by this and before this happened he was the happiest, smartest little boy. He smiled all the time (and now hardly ever) and he was an excellent student. But then I watched as this problem progressed and took over his whole world. It took over our whole family's world. His first symptoms were palate tremor and clicking in his ears. So once we got a diagnosis of palatal myoclonus, no one looked further or tried to figure out why there was excruciating ear pain. One doctor told me I needed to find out why he had muscle tremor in his soft palate and ears (but that is why I was at the doctor!) We have been to 7 neurologists, 5 ENTs, 2 dentists, 3 orthodontists, 2 chiropractors, 4 acupuncturists, a hypnotherapist and a nutrition specialist (Ayruveda -I always spell that wrong) over the last 5 years. No medications can touch this...no doctors ever mentioned neuralgias or eagles. I had to find them on my own. So, thank you for your kind words. They mean a lot. I am obsessed with helping my child. I want him to have a chance at life. So, my husband and I will find someone to agree to do the styloidectomy before we try the microvascular decompression surgery. It only makes sense. And we hope that in treating the root cause, his PM will go away as well. Then he will be the first case - and I will make sure it is documented and put on the Internet even if I have to do it myself so that other children with consistent ear pain and throat pain will be taken seriously. Thank you Jayde for sharing and I hope that you too find a good doctor to do a styloidectomy and help rid you of your life long issues. I have told my child that it is his job to "survive" until we get him the right surgery. Every day is a gift and we try to find one thing a day to enjoy together...even if it is a cupcake (I baked some yesterday).
Jayde said:
Ear Mom,
I am truly moved by your story ~ and no doubt the story about your son.
I am less than 2 days into my discovery of ES. At first I thought, "oh yeah, neck abscess surgery - that is maybe how this all came to be"…….. but now, I am not so sure about that! That experience was when I was 19, and I am starting to become a believer that my ES suffering DID begin in childhood. Chronic sore throat and severe headaches go back to when I was 7 yrs. old at the latest.
I also had a horrible "pass out" type experience in which I lost my vision and my hearing. My head fell back and I lost my balance. My body began sprinting backwards to keep myself from falling, and after flying at least 50 yards, I did fall back. Luckily, my pony tail holder/bun is what smacked the concrete rather than my skull. Maybe that was ES related, too.
Anyways, your story really affects me in that I really wish that my parents were on my "team" about the problems I was having. My pain and my illnesses were always this perceived burden for them and they never really did much to validate my perceptions of things being/feeling "wrong" inside of me. I was suicidal in my childhood as well, and they emotionally shut me out instead of choosing to relate to me and my internal world which was: suffering.
I learned to doubt my pain/debilitating problems, and to take everything on as me needing to buck up and DEAL with life. I felt I needed to be fake and present as "strong" and I developed a false persona. I self-medicated with alcohol for a few years, then almost died, then began a slow but relatively insubstantial healing process which takes me to now ~ I am 32 and just now coming to grips with why my pain has been the way it has and I am some relieved…… FINALLY!You are an absolute hero in my eyes! Talk about a tuned in and wise mother, standing up for her child and allowing IN his cries for help ~ coming back around to in turn be able to help him !!! Keep up the amazing parenting !!! I can imagine how hard it must be to have to watch your own child endure the pain and hardships of a rare syndrome like this, and I seriously applaud your abilities to be so present and your quest to acquire ALL the knowledge and appropriate medical assistance. Thank You for being You !!!
Ear mom,
My heart is aching, my chest is burning reading these stories. I am imagining the picture of your son before ES ~ bright, beautiful, and smiley. My eyes are welling up with feelings about the changes that come about. It is so sad and so heartbreaking that short of surgery, there is not a whole lot that can be done. You are right ~ medications do not touch this. I remember being dosed the highest acceptable amounts of morphine when I was hospitalized, and my body’s response was zilch… I became drowsy, but my pain experienced no change.
I am with you on feeling a strong pulling desire to GET THIS INFO. OUT THERE. For now, I am obsessed with seeking my own treatment and getting my surgery ~ after my recovery I am going to be on a mission to educate about ES. It is just… SO IMPORTANT to me to get the word out more.
I have a friend who is a pediatrician and I have already reached out in my state of very limited energy in order to discuss ES with her. I have also discussed it with my massage therapists and chiropractors - so far, none of them had ever heard of it, so obviously, dissemination of good information about ES is sorely lacking. I am seeing the dentist on Monday ~ I know exactly what I am going to be sharing with him and I am going to urge him to palpate my styloid and to learn more about this debilitating syndrome.
Please keep in touch and I will do everything within my power to share your son’s story.
Love, Jayde
Ear mom,
A couple of months ago I visited a doctor in a chiropractic office that administers prolotherapy injections. I was seeking relief for my never ending jaw pain.
I told him the story of my throat, and he decided to do some neural therapy injections for me. He injected procaine directly into my tonsils and my surgery scars. This struck close enough to take my symptoms away temporarily. My symptoms slowly came back, but I do feel some confirmations to myself that YES, this is ES. The procedure I had done is probably a lot like the nerve test that will be done when I seek out my ES diagnosis.
Jayde, I'm with you in feeling very passionate about raising awareness among medical professionals. I spent 45 minutes yesterday educating my central pain management provider with everything I've learned over the last three months since diagnosis. This person has been involved with my case for eight long years, works with a "spine institute" and has listened to my classic and vascular Eagle's symptoms all along, and had never thought to consider ES.
I have an image showing the back of my head from my 3D CT scan that I keep with me on my Iphone. If it seems appropriate in the conversation I share it with the provider I'm talking to and it is very powerful because I always see the light of realization go on in their eyes when they look at it. The picture is worth a thousand words - I see them trying to imagine what that would feel like and I know it is making an impression on their memory. Hopefully they will think of it next time they have a patient with unexplained craniofacial pain. I've attached it here...you can see the visual impact it makes on someone who is not previously aware of this syndrome. I just hope it saves someone,somewhere from unnecessary suffering.
533-beelzebub.jpg (21 KB)
Alaska Eagle,
Thank You, that is an excellent tip. Your image is very powerful ~ I can really feel that pain! The picture of sharp foreign bodies at war with delicate surrounding neck tissues - that happen to be supremely VITAL is a prime was to demonstrate the trauma of ES. Thanks again, thank you for the visual. I find the visuals on this site to be overwhelming… it’s like feeling into the throb of my styloids ~ I am so beyond excited to feel closer to moving forward with some kind of action that can potentially take my life back !!!
Alaska Eagle said:
Jayde, I'm with you in feeling very passionate about raising awareness among medical professionals. I spent 45 minutes yesterday educating my central pain management provider with everything I've learned over the last three months since diagnosis. This person has been involved with my case for eight long years, works with a "spine institute" and has listened to my classic and vascular Eagle's symptoms all along, and had never thought to consider ES.
I have an image showing the back of my head from my 3D CT scan that I keep with me on my Iphone. If it seems appropriate in the conversation I share it with the provider I'm talking to and it is very powerful because I always see the light of realization go on in their eyes when they look at it. The picture is worth a thousand words - I see them trying to imagine what that would feel like and I know it is making an impression on their memory. Hopefully they will think of it next time they have a patient with unexplained craniofacial pain. I've attached it here...you can see the visual impact it makes on someone who is not previously aware of this syndrome. I just hope it saves someone,somewhere from unnecessary suffering.
Ear Mom-- the nerve block was a direct injection with a needle into the nerve-like Novocain for dental work. It was done by an ENT/surgeon who cancelled my surgery in 1998 or 1999. It lasted for about 6 months as he considered surgery.
I will send you a friend request to list doctors-one is at cedars and one is at UCLA.
Shawn
After 3 days of calling the ENT who did my son's Botox I finally got the assistant on the phone. (of course I left 2 messages and sent an email...) Anyway, she told me they sprayed Xylocaine 2% before they put the Botox in. so my son got pain relief for about 5 days after that and then the pain came back. I thought it was relief from the Botox, but after reading the articles from Alaska Eagle and Heidemt, I realized it was the spray. And now that the lady just told me it is the same medication that you, shawn, mentioned...well I can't hold in my excitement!!! I screamed - I am so happy to have all this information. That means I have proof for the doctors because the spray gave him pain relief. I WANT MORE SPRAY. Will they do that for us while we wait to get on the surgical schedule? I hope so! I sent the articles you guys gave me to the last ENT we saw and I got a follow up apt next week. Maybe he will listen now---maybe he will even give my son another spray or injection of that Xylocaine...sigh...the thought of relief for him, even if temporary...thank you all for helping to get me to this point! You are all wonderful people and I pray you all find complete and total healing in your own journeys.