Is there an appeals process? For example, the definition of Eagle Syndrome seems to be over a certain length and causing symptoms. Yours are over the standard length.
Is it possible to pursue Transcranial Doppler that would show what is happening when you turn your head and other types of imaging such as Fiesta-C or 3d Ciss MRI to show what nerves may be affected by the long styloids.
I can understand not wanting to pay out of pocket. It might be worth it to continue to try to break through the red tape to get the government to help you.
I ran across a study done on Saudi people and Eagle Syndrome. If you work at it you might be able to make a case but as usual with Eagleâs Syndrome it is an uphill battle.
For example, this quote
"The elongation of a styloid process greater than 30 mm is clinically significant because it may compress adjacent vital structures, resulting in various clinical symptoms, including dysphagia, otalgia, orofacial pain, and a feeling of a foreign object in the throat. These symptoms are all common to Eagle syndrome " https://www.cureus.com/articles/220859-evaluation-of-styloid-process-elongation-in-madinah-saudi-arabia-a-retrospective-radiographic-investigation#!/
You might want to scroll through the citations on that article. There are several Middle Eastern references.
Here is one for the Aseer Region from a few years ago:
@SamH - I am also beyond shocked that it has been denied by a very knowledgeable ENT. Iâm completely astounded that Dr. Elliott turned you away as I believe he, of all doctors in AU, has the most experience w/ ES & doing surgery for it.
@Jules has given you a compelling reason to fight for surgery, if for no other reason than to liberate your hyoid bone (the greater horns look long to me, too) & your thyroid cartilage also looks pretty âinterestingâ. Seems you may have a lot of extra calcification going on in your neck & your symptoms certainly show it.
Iâve annotated your image with what I see that looks unusual. I didnât mark the styloids because theyâre obviously CRAZY LONG!!
There may be a genetic factor . When i saw the studies in saudi arabia that showed a lot of eagle syndrome type styloids i looked up calcification. One study showed higher CAC scores among middle eastern population. This could be due to higher risk factors like smoking etc.
There may be a genetic quirk that makes them more susceptible to calcification.
Or it could be as simple as the excessive heat is a contributing factor.
Hello JugularEagle,
Thank you very much for all the information that you provided.
In fact, the problem for me is the inaccurate diagnosis and the doubts of the doctors in Saudi Arabia about Dr. Hauserâs diagnosis, which caused me disappointment about the benefit of the surgery. Even in my meeting with Dr. Osborne last May, he told me that my symptoms might not go away after the surgery, which caused me great hesitation and disappointment about the surgery. I took a loan from the bank ($18,000) a year ago to treat neck instability with Dr. Hauser in Florida, and after seven months of treatment, I did not get any benefit from the treatment and I am still paying this loan. The cost of the surgery with Dr. Osborne is estimated at $34,000 per side, which is a very high cost for me, especially since I am an engineer and currently unemployed due to this disease.
I contacted Dr. Kamran Aghayevâs clinic in Turkey and they told me that I needed to do thoracic outlet syndrome tests to rule out this condition, which caused me new doubts and led me into other labyrinths.
@strongman This whole process is so long and frustrating. I saw Dr. Hauser as well and although he wasnât able to resolve my VES he did help me stabilize my neck and greatly improve my neck posture. I think that is helping me significantly post-surgery. Also, Dr. Osbourne said the exact words to me as Iâm certain he does everyone. This isnât like needing an appendectomy where you can be certain to feel better once the offending organ is removed. For starters, there could be a stenosis somewhere else that also needs addressing and, as Dr. Nakaji said to me, they can open up the path for blood to flow but they canât make the blood decide to go there. So no guarantees. In my journey I think I read just about every published article on VES, listened to the stories of people on this forum and consulted with many doctors. My testing confirmed a very high pressure gradient across the bilateral stenoses (from styloid and c1) all the way to the top of my brain. That sealed it for me and made the risk worth taking. I hope you are able to find the information you need to make the right choice for yourself.
I suspect just about everyone in the United States gets told this to prevent liability.
If I were you I would try to build a case that you do, in fact, have Eagle Syndrome using Saudi Arabia resources that are free to you.
I would be pushing for every test out there that I could get that wasnât radiation based.
It is going to be an uphill battle. You probably do have Eagle Syndrome. You have to figure out how bad and then convince the Government. There is surely an appeals process for when the Doctors get it wrong about a rare disease. For example, what medical definition are they using to determine whether you have Eagle Syndrome or not? If they donât want to call it Eagle Syndrome do you have testing that shows cranial pressure, jugular compression, etc. There are plenty of articles from Saudi Doctors explaining what can happen with Eagle Syndrome. The ones I have seen come from Dental profession.
Thank you Juaular and Chirckychricky, you really have great experience in this field and your contributions were very helpful to me and the information you provide is very useful to me and the rest of the members. Yes indeed, the hospital that the Ministry of Health referred me performed an evaluation based on more than one concept or technique, including that they said 1- that the brainâs perfusion works very well after examining it and after MRI images and that blood reaches the brain normally. 2- that most of the symptoms do not apply to Eagle Syndrome and this is in their opinion. 3- then they said that Dr. Hauser who wrote the medical report describing my condition is not originally a surgeon. And they ignored the length of the styloid process, which is 4.5 cm on the left side and 4.4 cm on the right side. And the matter ended with them here, but I reached a dead end. Knowing that they see hundreds of patients daily in this hospital and evaluate their cases and determine the appropriate path for them, they are an elite group of local doctors who are relied upon to diagnose the disease before referring them.
@strongman - Many of our members, including me, have seen very experienced doctors & surgeons who claimed to know about ES but still they misinterpreted test results & made claims that there was nothing wrong when there clearly was. What @Chrickychricky said about doctors not promising good outcomes from ES surgery is true. No doctor can promise a good out come from any surgery because every human body is âwiredâ a bit differently so we each respond uniquely to the stresses surgery puts on us. Many people will heal & be better from a given surgery, but there will be a few who donât.
I second what @Chrickychricky said:
âI hope you are able to find the information you need to make the right choice for yourself.â
I want to leave this story here for you. Your King went to Mayo Clinic with his entourage for a check up.
He flew back to the US for medical treatment two years later to undisclosed area.
When he wanted the best he decided on Mayo Clinic. He could afford medical treatment anywhere in the world including his own Country. Of course, medical treatment could have been a cover story for wanting to come to the US. Maybe he had some secret meetings . But just assume that reason was for medical treatment.
This is the same Mayo Clinic that really doesnât know how to deal with Eagle Syndrome.
World class treatment and/or reputation does not necessarily mean they know what they are talking about with Eagle Syndrome
I have no idea what other countries are like when it comes to internet speech. I do know people in China might get locked up for it. Probably Russia as well.
Not all people of the world can safely be critical. Just food for thought when reading posts from all over the world from people clearly in pain and needing help.
