Just "Diagnosed" with ES

I've been trying to find the cause of this recurring neck pain I've been having for almost 3 years now. I went to see an ENT just over a year ago, had a scope done and a biopsy for a small mass I had in my throat and at the same time I was having pain in the front right side of my neck and going all the way up to my jaw. At that point I had been in pain for almost a year just doing regular family doc visits while waiting on my appt.

I remember saying over and over again "It feels like something is pushing out from inside my neck" - and it almost seemed like the doc would just smile and brush it off like I was imagining it, and focusing more on the thing he could see which was in my throat. I was also experiencing numbness in one side of my face when the pain was severe. The mass came back negative, but the doc still tells me he doesn't feel imaging is necessary. I also suffer from severe anxiety so questioning what a doctor says isn't normal for me, I just like to assume they know best at the time. However I do my own looking around quite often to get 2nd and 3rd opinions, I just don't like to create a confontation. Long story short, he tells me "he doesn't know" what the problem is, and sends me on my way saying I can come back if the pain persists.

Almost another year goes by, the pain getting almost unbearable at times because it is constant and nothing seems to give me relief. Not only that but the wonder of why I am in this pain and why does it affect so many different areas of my face and neck. Several days ago I finally get a 2nd ENT appointment after about a 3 month wait. Without thinking I just said I would take the same ENT as he had seen me before, hoping it would speed the process along. Same process I get a scope done, everything looks normal he says. He finally decides to see if he can feel my styloid (I'm assuming) I don't really know much about ES at this point.

Long story short, his final conclusion was he is "almost positive" I have ES, but he really doesn't know what it is by his own account. He tells me to go look it up on the internet.. something in the back of my mind is screaming "unethical" but I really can't be sure. Tells me it is when a nerve and muscle connect to each other (which I found out very quickly is not true) and proceeds to tell me to go home and take tylenol , that imaging again isn't necessary, and that the only solution is surgery and he doesn't recommend it. Then he says come back in 3 months if I'm still in pain. Funny, because he knows I've been in pain for over 2 years. I just feel stupid at this point, I'm planning to go to my family doc and ask to see a neck surgeon and hopefully get some imaging done while I wait.

It just feels like I could have diagnosed it myself if I kept on long enough - would anyone here file a complaint for that alone? Doesn't a doctor normally try to have the information on a diagnosis when they diagnose you?

(I'm living in Canada by the way if anyone can give me some tips/advice on how to proceed it would be very helpful, I feel so lost right now. Also, I can't decide if other pains or numbness I've been having in my right arm and other issues on the right side of my body to do with pain and numbness are also part of it)

Thanks for reading! ;)

Hi Canuck,

I live in Vancouver, but there are about 18 Canadian members on this site, so there are a few of us who have experienced both the Canadian Health system as well as the search for a Canadian doctor familiar with Eagle Syndrome. The first thing you need to know, is exactly what ES is. There are a lot of incorrect definitions out there, and while the members of this site have different opinions on what it entails, you will get much better information here than from the mainstream medical community.

Check out all the educational material on this site and you are certainly welcome to view the document/links on my profile page. You can spend a lot of time searching the internet and you will get to the info you need, but most of us have already done that, so we can save you a lot of time.

I'm not overly familiar with the current system in Ontario, but here in BC, you're GP has to refer you to the specialist and while you're GP can order some CT scans, the type you need for a proper diagnosis can only be ordered by a specialist (ENT, etc.). Not much can be done about the wait for the CT scan (pretty much the same all over Canada), but if you have access to a private clinic in Ontario and you have the fee available, you can probably get one right away.

The trick is getting the right type of CT Scan and having a Radiologist familiar with the condition to interpret it properly. With that scan and diagnosis, it will be easier to find someone to help you, even if they are not completely familiar with ES.

We have two ENT's in BC that are familiar with ES. One in Victoria (whom I have never met) and one in Surrey (Dr. Morzaria), who is my ENT as well as another member's (R.B.- she actually just had surgery performed by him).

Dr. Sanjay Morzaria

■■■■■■■■ 120th. Street
Surrey, BC V3W 3N5 Tel:778.565.3239 Fax: 778.565.3249

Dr. Wong, Frank Sou Him

■■■■■■■■ Fort St
Victoria, BC V8R 6V4
Tel: 250-■■■■■■■■

Dr. Morzaria has arranged for me to have a 3D Ct Scan with contrast, and this is the important part, IN SAGGITAL PLANE VIEW. The standard format for CT scans is in AXIAL PLANE VIEW, but given the directionality of the growth, that wouldn't give a very clear picture. You will need to have a blood test for kidney functionality, as the contrast dye can affect the kidneys. While you at it, check your: Thyroid Hormone levels (TSH), Ionized Calcium levels, Creatinine & GFR, Phosphorus.

These blood tests will help with the diagnosis and determining whether you have the ossification type of ES or the calcification type of ES. Perhaps you have a good GP who will order these tests.

I would be happy to go into more detail for you if you want to private message me.

Good Luck,

Red Pill

I do not want to hijack this discussion,but Red Pill, may I add these two doctors to my spreadsheet.

Canuck, I hope you get some encouragement and support from our discussions. I so hope you find someone to help you and wish you a speedy resolution.

Hi Emma,

I don't see why not. It should be noted that R.B. referred me to Dr. Morzaria and that I have no particular knowledge of Dr. Wong's competency. I have only seen Dr. Morzaria briefly and both he and I await the Ct scan before proceeding further. He seems to know his stuff and is pleasantly mannered.

It would be nice to have a more beefed up international section on your list. Thanks for compiling it and maintaining it.

Red Pill

Just wanted to do a quick thank you here Red Pill, that was quite a long response and I appreciate the depth you went to try and help me understand what to do next.

Good luck Canuck

Canuck said:

Just wanted to do a quick thank you here Red Pill, that was quite a long response and I appreciate the depth you went to try and help me understand what to do next.