My journey

General Eagle Syndrome Stories
1

Good day to all.

First I want to thank you for accepting me in your group. I am Canadian, I live near Ottawa the capital of Canada. I have been with symptoms for over a year now, no Canadian physicians could understand my situation.

I decided to go to New York at Mount Sinai, I had MRI, MRV, MRA and scan of the temporal bone last September. I was told about the styloid bone Eagle syndrome.

Thanks for reading my story.

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2

Hi & welcome!
It does seem to be particularly difficult to get diagnosed in Canada, and even harder to get treatment! Now that you’ve been diagnosed, will you try to get treatment in Canada, or travel back to the US?

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3

@Hamela if you’ve ever had a head and neck CT and have access to it, I can show you the styloids and any IJV compression!

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4

Hi Jules,

So greatful to be accepted in this group :slightly_smiling_face:

I will continue my journey in the USA. I am privileged to have met an American specialist who could understand my situation.

The Eagle syndrome nomenclature is new to me, I have a lot to learn.

Take care!

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5

Hi,

Nice to meet you virtually :smiling_face:

I don’t have a 3D scan. I had MRI, MRV, MRA, and Scan of the temporal bone at Mount Sinai. My specialist was able to see the calcified styloid bone with those tests. My next step is the angiogram/venogram with balloon occlusion test.

Take care!!

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6

We do have a list of questions we suggest that you ask your doctor depending on how many surgeries they’ve done, there’s info in the Newbies Guide Section here:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle

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7

Hi, Hamela,

I am in Waterloo, Ontario. I have had symptoms for probably 20 years but just attributed it to my RA. Over the last decade, I have been trying to get answers as things have decidedly worsened. I eventually spoke to the right ENT who sent me on the right path with specialists in Toronto at St Michael’s and Toronto Western. If you’re looking to get help under OHIP, there is help to be found. Because ES is so rare, it is not on most dr’s radar. The process can be frustrating, but it is workable. Now that you have a diagnosis and understand the path forward, you should be able to follow that path on this side of the border if you choose. I know there are many of us on here who have seen the same doctors. If you would like more information, let us know!

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8

Hi Deanna!

Nice to hear from you. I am glad a doctor in Toronto is available. I want to continue my journey in the USA. How long is the wait in Toronto, just curious?

Thanks for the information

Take care :slightly_smiling_face:

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9

I think it was only a couple of months between my getting a doctor to refer me to Vitor Pereira in Toronto and my actual appointment. I have had a few follow Ups because we are also investigating the effects of the intracranial hypertensive pressure. I can’t believe how many ongoing issues I have had that are actually attributable to the ES! - Anyway, my wait was not long at all to see the specialist.

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