I am at a dead end. I live in Ontario Canada and have just learned that there are absolutely NO DOCTORS in Ontario that will perform surgery for ES.
I don’t know what my next move as is? I am in a lot of pain ALL the time as are many of us. I feel it cutting me inside my neck when I move my neck in various positions. I’m so afraid it’s still growing and will puncture an arteryThe Dr who diagnosed me gave me no particulars on the disease, just that I have it. I went to the dentist and had a panaramic X-ray which shows the styloid. Wish I could share but I don’t know how. I’m just using my phone? Will this continue to grow?
Unfortunately the situation in Canada is ridiculous for ES, we’ve had lots of frustrated members here. We did have one member who had intraoral surgery with a Dr Gupta, in Hamilton, Ontario. I don’t know if you’ve seen the Doctors List in the Doctors Info Section? Or if it’s possible for you to travel anywhere else in Canada- several members have had surgery with Dr O Connell at Uni of Alberta recently.
Also Onelessstyloid saw a research paper about vascular ES written by a Dr A Alkakkan, a Neurologist at Uni of Toronto, maybe worth looking into?
A skull base surgeon, or a head & neck surgeon otherwise might be worth a try, as although they might not usually treat ES, as they operate in the same area.
I’m afraid that we can’t say whether the styloids will continue to grow, or whether ligament calcification will get worse. Some members have had theirs settle & not get any worse, or even ease off, but if I’m honest, that doesn’t usually happen…
Sorry that I can’t be more helpful, but hopefully there’s a few leads for you to try!
Thank you Jules for responding. Can surely always count on you for an informative response. I don’t understand why Drs here do a surgery or two and then refuse to do anymore? The results of this condition are in a lot of cases life altering. It has been for me. It baffles me?
I will look into Dr Gupta as you suggested.
Have you had the surgery Jules? If so, how do you feel since?
I think unfortunately those doctors haven’t removed enough of the styloid, so the patient still has symptoms, & the doctor presumes surgery doesn’t help! There’s a research paper which looked into success rate, & concluded that was the reason for surgery not helping. And some of the doctors we knew who did surgery are head & neck cancer surgeons, so want to concentrate on that- understandable I guess, but as you say it can be life changing surgery…
I had surgery 5 years ago & 4 years ago, I had vascular ES & it’s made a huge difference to my life! I still get a bit of nerve pain, but not like I had before. The vascular symptoms were getting horrible, so was mighty glad to get rid of them!
I’m in the UK- we have similar waiting times to you, & very few surgeons, but I was very fortunate to find out about one on here, who was not too far from me!
Hope that you can get some help soon…
Thanks Jules. I am so grateful for this site and really appreciate your feedback.
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Hi Patch, Welcome to this group! Having received a diagnosis is a critical part of the ES journey, so congratulations on passing that milestone. I know a few others have posted that they were able to have treatment in other provinces – is this an option for you?
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Hi onelessstyloid. Thank you for the response. Sorry it’s taken so long for me to respond back. Using my phone is just not good for communicating anything lengthy on this site. Just heard from my Dr today and I have an appt with Dr Gupta in Hamilton on Nov 4.
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That is fantastic news, Patch! I hope Dr. Gupta is supportive & helpful to you!
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[https://yyz1.discourse-cdn.com/flex027/user_avatar/www.livingwitheagle.org/isaiah_40_31/45/2453_2.png] Isaiah_40_31https://forum.livingwitheagle.org/u/isaiah_40_31
August 18
That is fantastic news, Patch! I hope Dr. Gupta is supportive & helpful to you!
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Thank you Isaiah. It’s a long and fearful process when you don’t have a Dr that understands what you’re going through. Everyone on this site is so kind. Thank you for your words of encouragement.
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I want to thank you Jules for recommending I look into Dr Gupta in Hamilton. I now have an appt scheduled with him Nov 4th. What would we do without the direction of all the beautiful people on here? We’d be lost. Thank you! thank you! thank you!! 
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How wonderful Patch. Your persistence is paying off!!
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Just passing it on- I’d never have had surgery if I hadn’t found out about my surgeon on here; Ben’s Friends is such an awesome idea!
I hope that your appt goes well with him, a bit of a wait!
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Sorry you can’t find Dr. I’m in Rochester Ny and don’t feel there are enough experienced Drs here even. My ENT Dr said it’s unlikely they will keep growing. My bones are 4.6 and 4.7cm. He says they are longest he’s seen. I just had pre-op appt and not comfortable. Can you come to the USA for surgery, does insurance allow it?
eastmas1 -
Are you uncomfortable from your pre-op appt (i.e. did your doctor poke around & you’re in pain) or are you not comfortable w/ the doctor himself?
Hi eastmas1. I sure hope you can get the help and relief you need from your Doctor there. Unfortunately our medical care is not even provincially transferable without preapproval so the States is out of the question. ( funny, I am American , dual actually but have lived in Canada most of my life) Jules has suggested a Dr here in Ontario so that was a fruitful lead as I now have an appt with Dr Gupta in Hamilton on Nov 4. A ways away but it’s a step forward. With all the symptoms I am experiencing, I’m not even able to work. So in addition to the constant pain is also stress and anxiety fearing how I am going to live if this condition continues to progress. I pray for all of us. This forum has been a Godsend to each and everyone of us in one way or another. Many many thanks 
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Yes, had pre op and Dr stuck instrument into nose down to throat and touched throat. Been in horrible pain since.
Oh no 
I had that same procedure done. It didn’t hurt like that however I am in constant pain in various ways. Is it growing into your throat? It is mine. I know it’s hard to describe pain but if you can, what are you feeling? Are you on any pain regime?
No meds. The pain is numbness in outside of neck and intermittent pain in throat like somebody giving me a Karate chop to throat. Others times it’s like somebody poking my throat with a pointed pencil. Ear ache off and on too.
Hi eastman1. That’s a good description. It sounds like he hit the tissue that the styloids are running down against and provoked the nerves. Has the styloid ligament grown into you throat in around the tonsil area? You can feel it with your finger if it has but you have to feel back pretty far so you might gag. That’s how I found mine. No Drs found it. I have that karate chop feeling more often than not as well as the sharp foreign object down my throat and in my ear… None stop for almost 2 years now. For me, tramacet has been my pain regime but it’s barely reducing pain anymore. Do you find that moving your head up and down causes more discomfort? Kinda makes it tighter? You can try heat… or ice to relieve it some. My heart goes out you. Each of us knows our own pain and how it effects us. Just knowing someone else is experiencing that very pain is heartbreaking. I pray for you that this pain is only intermittent and goes away soon. It’s almost unbearable without pain meds if it becomes chronic. Did the Dr schedule surgery for you or what was the outcome of that visit? Please let me know as you will be in my thoughts.