After 8 years suffering from pain and weird symptoms I finally got an ES diagnosis yesterday! Over the years I have seen MANY specialists and done several MRI´s, x-rays, CTs, ultrasounds etc. Five years ago ES was actually ruled out based on a cervical x-ray. It wasn´t until I started having more severe and frequent symptoms two years ago that I actually googled ES for the first time (diagnosis the doctors here had given me were: "There is nothing wrong with you", muscle tensions, anxiety." My jaw just dropped as I was reading about it, because all the symtoms coincided with what I was experiencing. I then found the YouTube video of Deleone and this site. Reading your stories was like reading about myself! Thanks to all of you I did not give up! I insisted on having done a CT scan of the styloids with contrast (which in the end they insisted to do without), and I didn´t give up when the doctors here told me that the results didn´t show anything abnormal, or that they were not long enough as to give the symptoms I am experiencing (scan showed they are around 3.5 cm and slightly curved), or that my symptoms were not typical (for instance my cervical pain) of ES.
A few moths ago a found an experienced ENT and neck/skull based surgeon in Barcelona (I live in the Canary Islands outside of mainland Spain) who has many ES surgeries under his belt. The other day I contacted his secretary and she told me to send over my scans and she would have the doctor take a look at them in case I needed more/new tests. Well, yesterday I received an e-mail where the doctor confirms that I have Eagles Syndrome and that no further tests are needed. I just broke into tears... Finally somebody who took me seriously and who could confirm that I suffered from something as rare as ES, that I wasnt´t "crazy", and that I do know my own body the best! He recommends bilateral surgery via intraoral. I need to go there soon to hear the details of what he saw in my scans (that other doctors overlooked) and to discuss my options. I know I will have to do surgery, even though that scares me - A LOT - , but I´m more worried about living my life with the reduced quality like I do now. I just have to man up to go through with it! And I have five months do so so while I wait for my insurance to include surgeries in my policy.
So, thank you, thank you, thank you again for sharing your stories and experiences - if it weren´t for you all I would have given up a long time ago! I have learned that it´s important to stand up for oneself and to NEVER give up! I will probably have more questions as I get closer to my surgery. Any thoughts on insightful questions I should ask the doctor when I go there?
Thank you for sharing your story! You give me hope that the same will happen to me...Though.... if I have to go to Barcelona, to have an experienced Doctor look at me it would be well worth it! Not to mention, I've always wanted to go to Spain! Keep us posted.... My motto is~ it's about the quality of ones life....not the quantity..ES has taken up so much quality of my life at this point. I would go to the moon, if it would take away my pain......
That's great, another small victory....! Don't be hard on yourself about 'manning up'- the surgery does have risks, so isn't to be undertaken lightly anyway! I've not been given the chance to have surgery yet, so others will have more insight, but what I've picked up from other discussions is that you need to check how much of the styloid will be removed- as much as possible is best. Also is your surgeon proposing to do both sides in one go, or separately? Others on here have been told that it is not a good idea because of the post-op swelling, so maybe check that out? It's good that he's experienced, so good luck and hope that you don't have to wait too long! Keep us posted!
Do you have the link for that youtube video? Thank you.
Jules said:
That's great, another small victory....! Don't be hard on yourself about 'manning up'- the surgery does have risks, so isn't to be undertaken lightly anyway! I've not been given the chance to have surgery yet, so others will have more insight, but what I've picked up from other discussions is that you need to check how much of the styloid will be removed- as much as possible is best. Also is your surgeon proposing to do both sides in one go, or separately? Others on here have been told that it is not a good idea because of the post-op swelling, so maybe check that out? It's good that he's experienced, so good luck and hope that you don't have to wait too long! Keep us posted!
Thank you so much for your support! It sure was a relief finally getting a diagnosis after so many years not really knowing what was going on and so many worries! Now I’ll have other worries… I hope for the best though! I hope you all will find the right doctors also and that we’ll all have relief from our pain and weird symptoms one day. In the U.S you seem to have, from what I have read on the forum, a few good doctors with ES experience. I was in doubt I would ever find anyone here in Spain, so I was sooo glad I was able to find one after so long! Jules, I think my surgeon is proposing to do both at the same time. I’ll have to ask him when I see him. I will also make sure to ask about how many ES surgeries he has done, and intraoral vs. external approach (I think he does both). Nanners, you should certainly visit Spain one day, hopefully without having to look for a doctor here…hehe. Shoppergirl, I see you’re in Virginia - I was an exchangestudent in Roanoke in my youth - beautiful state!
I had intraoral on both sides, 3 months apart. Best thing I ever did. I have my quality of life back. I am 7 months post op on left side and 4 months post op on right side. Good luck!
I had intraoral on both sides, 3 months apart. Best thing I ever did. I have my quality of life back. I am 7 months post op on left side and 4 months post op on right side. Good luck!
Hi Lisa. Glad to hear you have an appointment soon! Good luck to you as well! Wouldn’t it be wonderful if we could have a chance to have successful surgeries and get “our lives back”?
Marie, it’s so great to hear of successful surgeries like yours! It gives hope! Did you get the whole thing out with intraoral? Did all of your symptoms go away? Thank you.
I just saw your initial post & read through the responses. I had my first surgery in Nov. The ENT/surgeon I chose has done 80 plus ES surgeries, so he's very experienced compared to some doctors. As Jules mentioned, my surgeon is adamant about only doing one side at a time because the post surgical swelling in your throat can be extreme - to the extent that your throat can close up entirely & a tube has to be inserted to keep you breathing. On my second post-op morning, I woke up feeling like my throat was nearly swollen shut even though I only had one side done. It was a scary feeling. Fortunately one of my required post surgical medications was steroids & within a few minutes of taking my daily steroids, my throat started opening back up. I will be having my second surgery in May. My surgeon only does the extra-oral approach as he feels this is safest.
I will pray for you to have wisdom when you see the doctor in Barcelona. As you said, you know your body best. Don't let anyone try to talk you into something you don't feel is right for you!
Good luck Nenufar, i had the same problem to find someone who took me seriously. some of Doctors looked in to my eyes and said you have nothing. Hope you will find a specialist in your area.
Well (sighs) I think so lol Im so tired of pain and headaches. Its only getting worse. Im so scared...SO scared. I hate surgery and fear dying during it :( Sorry Im such a worrier. I always think the worst
Lisa said:
Congrats! Ive had this since 09 and finally am seeing a surgeon the end of the month. Good luck to you!
Hope your appt. goes well Lisa- have you decided to go for the op now?
When you ask if they took the whole thing. Does this mean they sometimes dont remove it all? Or does it mean if they go inside the mouth they tend to leave some and if they go through the neck they remove it all? Sorry just deciding which wy to do mine. I want it ALL gone. x Nenufar said:
Hi Lisa. Glad to hear you have an appointment soon! Good luck to you as well! Wouldn't it be wonderful if we could have a chance to have successful surgeries and get "our lives back"?:) Marie, it's so great to hear of successful surgeries like yours! It gives hope! Did you get the whole thing out with intraoral? Did all of your symptoms go away? Thank you.
As I understand it, the access to the styloid is better & more of it can be removed through the external approach. Intraorally the "work space" is much more limited and less of the styloid is accessible therefore less can be removed.
I've had one side done extraorally & even w/ that, my surgeon could only remove an inch of my styloid because of a nerve that was wrapped around it. Hopefully when I have the other side done in May, he'll be able to take the whole thing.
Hope this helps.
Isaiah 40:31
Lisa said:
When you ask if they took the whole thing. Does this mean they sometimes dont remove it all? Or does it mean if they go inside the mouth they tend to leave some and if they go through the neck they remove it all? Sorry just deciding which wy to do mine. I want it ALL gone. x Nenufar said:
Hi Lisa. Glad to hear you have an appointment soon! Good luck to you as well! Wouldn't it be wonderful if we could have a chance to have successful surgeries and get "our lives back"?:) Marie, it's so great to hear of successful surgeries like yours! It gives hope! Did you get the whole thing out with intraoral? Did all of your symptoms go away? Thank you.
Welcome to the group. It is wonderful when you are diagnosed and figure out that you are not a hypochondria !! Good luck with the surgery. Have it as soon as possible you won't regret it.
Thank you all for your kind words! Kimmiesue, I just read your story. It´s great to hear of successful stories like yours:-) Just wondering, it looks like you had both taken out at the same time (external/internal approach?)? Was the recovery tough? My doctor has recommended the internal approach (he does both) and to take out both. I´ve got an appointment to see him in May. It will be good to get the details of it all (the diagnosis was only given on e-mail from his secretary after he reviewed my CT scans) in person and to hear why he thinks the internal approach is better for me. I´ll make sure to write down all my questions before I make an informed decision!
