I live on Vancouver island in British Columbia, Canada and I am having difficulty finding an ENT doctor with much experience doing ES surgery. The few, I find either no longer perform the surgery, or have done perhaps 1 surgery, or are poorly reviewed. Canada is large and I am willing to travel if need be but would prefer to limit the travel to western Canada. Can anyone help me find a surgeon here that I could feel confident about?
Wayne
Hi @Wayne!
Here is our current doctor list for other countries. There are a number of doctors in Canada who have dealt w/ ES though some have more experience than others. I hope this helps.
https://forum.livingwitheagle.org/t/doctors-familiar-with-es-countries-outside-us-2019/4753
Thanks for your help. I already saw this list of doctors which has several listed for Canada. However, the Canadian doctors who used to provide the surgery, including the ones I’ve contacted on the list, either no longer do the procedure or are of the opinion that surgery does not help. So I am currently looking for someone here who either still does styloidectomies or knows of an alternative approach that is successful at eliminating the pain and/or risks associated with vascular compression. I have even been looking at the UK.
Wayne
Hi Wayne,
As I noted, Dr. McConnell in Alberta did surgery for two of our members w/in the last couple of months. He seems very open to ES surgery as a tool for recovery.
Additionally, Dr. Samji in California is closer to you than UK (though I know the med insurance systems are different). He is the most experienced ES surgeon in the US. You could send your CT scans to him for a second opinion. He does video consults for about $600 USD/45 min consult. He’s a phenomenal surgeon. He did my surgeries almost 6 years ago. They have given back my full ability to function normally. He has a reduced rate for cash paying patients.
@Wayne,
I don’t know how widely you’ve read on the forum but here’s some info that will be helpful for you:
The symptoms of ES are caused by irritation of up to 6 cranial nerves that “live” in your neck in the same area as the styloid processes & stylohyoid ligaments. Elongation of the styloid(s) &/or calcification of the stylohyoid ligaments can cause irritation to these nerves. Alone each nerve when “upset” can create painful & sometimes scary symptoms. When more than one is irritated the symptoms caused can be downright debilitating. Additionally, vascular compression of the internal carotid artery &/or jugular vein can occur which creates other miserable & concerning symptoms. Obviously, the solution for recovery is to remove the offending bones/ligaments so the nerves &/or vascular tissues can recover. There is a series of YouTube videos called Two Minute Neuroscience. Each cranial nerve is featured in a two-minute video w/ explanation as to location, function & dysfunction of the nerve. It would be good for you to watch them. These are the nerves affected by ES: vagus, facial, glossopharyngeal, hypoglossal, trigeminal & accessory. Additionally, the optic nerve can be affected by IIH (idiopathic intracranial hypertension) caused by vascular compression of either the internal carotid artery or jugular vein. Hopefully the information you receive will help you understand the source of some/most of your symptoms.
If you elect to go to the UK, Mr. Axon is the doctor to see there.
Thanks again. I have done loads of personal research including watching numerous videos. I have a diagnosis from my ENT doctor but he has only done the surgery once with some trepidation. I’m searching for someone with more experience.
Wayne
I don’t know if it’ll help, but it could be worth looking at Skull Base surgeons/ otolaryngologists, as well as ENTs. Head & Neck cancer surgeons can be used to operating in the styloid area, but obviously will be very busy. Some members have seen Neurovascular surgeons too; if you can find any & they operate in the Head and neck area it could be helpful…
I have to say that a long flight home from the UK after surgery would be very gruelling, but if you are considering it, as Isaiah says Mr Axon in Cambridge is the most experienced UK surgeon that we know of. He does work privately through Spire Health care at the Spire Lea Hospital in Cambridge.
Hope that you can get somewhere soon…
Thanks Jules. Most otolaryngology practitioners and ENTs are categorized under the same heading hear it seems and they seem to be the ones who do most of the cancer surgeries in the neck, ears etc. My daughter and her family live in England which is why I have been considering it as an option. Thanks for the tip with Mr Axon.
Wayne
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