Sorry tonight I am very angry and depressed. I have Eagle syndrom with probably jugular compression (tomorrow I will have angioscanner to confirm or not…).
This evening I received the report of the doctor ORL(en France) who works in a regional university center (so not a small hospital!) . In the report he wrote:
“Initially, given the wide range of functional symptoms, I find the uncertainty of the cause-and-effect relationship too significant to proceed with surgery. You could perhaps reassess her after a three-month course of antidepressants, and I could possibly revisit her if the clinical picture has improved somewhat, focusing on the more classic symptoms.”
My symptoms are styloids right and left of about 40 mm, the doctor has touched them in my mouth, great pain in my throat, blurry vision, dysphonia( sometimes i can’t more speak) ,vertigo , very tired,lots of translucid phlegm …Of course I am depressed because since April nobody believe me.For having prescriptions of scanner,IRM and angiography I had to fight with the doctors( genralist doctor, 4 ORL, neurologue…)
What that doctor wants more?? How would you react if tomorrow my angioscanner show my jugulars are really compressed(perhaps also problem with carotid and hyoid bone: I had help for reading my scanner of @Jules and @Isaiah_40_31 )
I am so angry that I would like do something to put these know-it-alls in their place. Sorry for outburst of rage . Thanks
Feel free to vent, it’s beyond frustrating that doctors don’t understand the wide range of symptoms that ES can cause, and aren’t prepared to look into it either! All too easy to fob somebody off as being anxious or depressed!
See what the scans show, get copies if you can…then I would suggest getting some of the research articles which mention the same symptoms as you have translated & printed off to show the doctors. We can help suggest the best articles once you’ve got your scan results…
Again, it’s fine to be angry when you’re being treated like this, we understand completely on here…sending you a hug
@Veroguilnec - I am so sorry & sad that the doctor said what he did! He didn’t even have the courtesy to speak with you directly but sent his message through someone else. That is most unprofessional!!
In case you don’t know this, anti-depressants are a form of nerve pain medication so if you decide to try taking an anti-depressant, it might help reduce some of your symptoms.
Good shout @Isaiah_40_31 , I just thought that he was fobbing @Veroguilnec off with anti-depressants, but maybe it was for nerve pain, I jumped to conclusions!
I was just hopeful that what I suggested was his intent, @Jules, but it could also have been a maneuver to postpone having to deal with the problem. Maybe a little of both. Sigh…
Sorry for my late answer: I went to take care of my little boy of 3 years old who caught chickenpox…so no time and no energy to connect on the forum. And also , I confess, “a certain ostrich policy” to keep away problems I am really too painful (the waves of pain change in intensity every day ) . That last night I can’t sleep before 6 o clock AM , and at 6 I took anti-inflammatories are not good for my kidneys.(solupred)
Now the pain comes somtimes at right too and the pain seems tocome down as usual in my throat. My throat was so dehydrated that last night, like fire in it…
When I put my fingerI placed my finger just once on a specific spot on my middle neck and it triggered a sharp, stabbing pain that I haven’t been able to reproduce since . Was it styloid or hyoid bone. I have the sensation I have the feeling that now the hyoid bone is joining the dance of pain.
@Jules I have already done what you suggested to me”getting some of the research articles which mention the same symptoms as you have translated & printed off to show the doctors.”
The result for now is:”no we don’t want to read!”
@Isaiah_40_31I am quite sure the doctor I saw in the regional university center had only read some google information just before I came. When at the end of the consultation I show him my pictures 3D scanner and asked him “what is it? “ “Carotid he said” ..but I know it is the big muscle…(you helped me a lot to read my 3D scanner) At the end of consultation he said me if there will a surgery he will only break the styloids!
And for treatment he gave me nothing …For him the only treatment was about my depression …
@Veroguilnec - I’m sorry your son had chicken pox. I went through that with both of my children when they were young & remember it felt like quite an ordeal at the time. I’m glad he is better now & hope you & others in your family don’t get it.
[quote=“Veroguilnec, post:6, topic:21804”]
I have already done what you suggested to me”getting some of the research articles which mention the same symptoms as you have translated & printed off to show the doctors. The result for now is:”no we don’t want to read!”
[/quote]”
This only shows that the doctors prefer to remain ignorant than to help you. That’s very sad! I don’t understand a doctor not wanting to increase his/her field of knowledge especially when a patient has clear evidence of a rare problem.
We have a member on our forum now whose surgeon first broke her styloids & left them in. They re-attached after some months. He recently did intraoral surgery for her & only removed 1 cm of styloid leaving most of the styloid in place. He said he prefers to take conservative measures in treating ES. We have learned on our forum that conservative measures usually don’t provide good long-term results. Only breaking the styloids can leave dangerous sharp edges that can damage nerves & blood vessels even more than an attached styloid can. We don’t understand the mindset of a doctor who thinks breaking the styloids is the answer.
It seems that more & more you’re finding that you may need to go outside of your country to get the help you need. You’ve mentioned seeing Mr. Axon in England & Dr. Aghayev in Turkey. Have you been able to schedule an appointment with either one? Dr. Aghayev does telehealth appointments for initial consults so he might be a good doctor to contact first.
@Isaiah_40_31 Hello, for now I only read all I can about Dr Aghayed and Dr Axon …Now I have my last angioscanner(for now I haven’t have a look on it : so terrified about the result) that I can also join in my future contact. But I am really stressed to have surgery ,especially in a country I don’t speak the language.
About broken styloids I have read what you said here (thanks so much to exist!) and it seems so obvious that isn’t the good way that I can’t understand these doctors do that . If they really want to improve their skills in medieval studies, they have so many ways to learn!
For my grand son of 3 he is Ok that sunday…Hope as you said now my husband and I and the parents too will will be safe these next days. Have a good Sunday( I just get up very late becaus so painful)
I’m so sorry that the doctor didn’t want to listen! I can understand it, like @Isaiah_40_31 says… I hope your little one is recovering from the chicken pox, is he your only child, or might you have to go through it again? My two were 2 weeks apart catching it, and the second one had a worse time… the joy of having children! But very hard when you’re in pain yourself, so sending you a hug
@Veroguilnec - Hopefully your report will clearly show you have vascular compression so you have a strong position from which to push for surgery. From what people have said who’ve seen Dr. Aghayev, he has a translator or translators who work with him as he sees so many patients from other countries. Having a translator to help you would make an appointment with Dr. Aghayev far less stressful.
I’m glad you have your report now & hope it will help you to take the next step toward having surgery so you can recover from your symptoms & start living your life again!
Hang in there . Keep fighting keep digging. It took 6 years of dizziness, speech, walking ,vision issues, fatigue issues multiple doctors. and finally a cone beam CT found the styloids via chiropractic. Then I did research, found this page, from there I found Dr. In Pittsburgh. Then ct angiogram that showed slightly compressed jugular left side. Which wasn’t too concerning. Doctor said that this may be causing some of my symptoms. But remember eagles is rare and not every one has symptoms by the book. Riht now I am 2 days post op styloidectomy. It’s a long hard battle but keep going, you are your advocate. Sending prayers that you find help soon. It is so frustrating but you just gotta keep going.
@Heather2025 - I’m glad your surgery is done. The first post op week is the hardest w/ swelling peaking at days 3-5. Icing every couple of hours for 15 min at a time plus keeping on your pain meds schedule consistently will go far to helping you get through the worst of the first week. If you’re taking Rx pain meds, you’ll also need a stool softener/laxative to keep your “plumbing” from getting clogged. Sleeping & resting w/ ~30º of head elevation will also help relieve some throat & neck swelling so you can get better rest at night.
Please give us updates as to how you’re doing as the weeks progress. I’ll pray for you to have a smooth recovery & good symptoms relief.
I’m so sorry for your bad state of mind, @Veroguilnec . You’ve gone through so much trying to find an accurate diagnosis so you know how to progress with your care. Your journey has been discouraging. Your vagus nerve is what controls anxiety/depression. Some things you can do to “help it” are humming, gargling w/ cold water, or taking a cold shower (I’ve never been able to get myself to try that one ). There are other things you can do, too. Here’s a link with some easy suggestions & good information: 5 Vagus Nerve Exercises to Calm You Down Now
Have you been able to contact Mr. Axon, Dr. Osborne or Kjetil Larsen to set up a consult yet? I hope you’re able to schedule something soon.
@Isaiah_40_31 I have contact Kjetil Larsen but as I have for now no paypal account it is a first problem. I only usually use my visa card with an alone number for the payment.
And for Docteur Axon i haven’t find the good link.I have find that one, but as I haven’t postcode it is wrong
I am really too painful (the waves of pain change in intensity every day ) . That last night I can’t sleep before 6 o clock AM , and at 6 I took anti-inflammatories are not good for my kidneys.(solupred)
We have a member on our forum now whose surgeon first broke her styloids & left them in. They re-attached after some months. He recently did intraoral surgery for her & only removed 1 cm of styloid leaving most of the styloid in place. He said he prefers to take conservative measures in treating ES. We have learned on our forum that conservative measures usually don’t provide good long-term results. Only breaking the styloids can leave dangerous sharp edges that can damage nerves & blood vessels even more than an attached styloid can. We don’t understand the mindset of a doctor who thinks breaking the styloids is the answer.
) 
His brother of 7 years old had already have that disease. Thanks so much Jules
). There are other things you can do, too. Here’s a link with some easy suggestions & good information: