Oops! Sorry about that! Here’s the link again.
Thank you! Missed this before. I appreciate you sharing, very easy to see the possible connection with accessory nerve impingement
I too came across Dr. Gupta’s name after several no’s. I’ve had a referral sent to his office but i haven’t heard back.
I spoke with Dr. Osborne a couple days ago and he seemed quite nice and seemed knowledgeable about ES vascular, which i have. I’ve noticed some posts on the forum saying he hasn’t done many surgeries but he told me he does 3 or 4 a month. no idea how to verify that. Anyone out there have Dr. Osborne do their Styloidectomy?
I too think mine is vascular and also think the spinal accessory nerve may be involved. My traps and scm have had ongoing problems for years. I had a CT angiogram ordered by a vascular surgeon but no venous tests. There does not seem to be protocol for testing for vascular eagles in Ontario … maybe there is, just that it is a condition that not many want to investigate. Wish I could get tests with head posture changes to know for sure. Even getting styloid length measured here seems to be a problem - I had to get that done by a radiologist in usa.
I can make my hands change colours with upper head / thoracic posture changes. Head noise at rest, feeling of nausea, suboccipital pain, etc. There are other things going on - TOS ( already had surgery for this), cervical disc compression but honestly believe eagles is part of the picture. I keep getting passed from one practitioner to another with no one spending much time to dig deeper into the symptoms. covid is putting a huge strain on our overburdened health care system. How do you know you have vascular symptoms? What tests did you have done?
I had a consult with Dr Osborne as well 6 months prior. He seemed to think he could help… did you receive a quote for his services? I honestly want to have this addressed in Canada due to cost in usa . I have been put on a 2 year wait by a surgeon in Ontario, but that is too long. Am also looking to get the procedure done by a neurosurgeon in Mexico.
I’m not sure we will find anyone in Canada that does this on a semi regular basis. From what I’ve read in the forums and from calling around I don’t think there are many with more than cursory experience with it.
I have a CT venography that clearly shows almost complete constriction of my left Internal Jugular Vein – and from my symptoms I’m sure I have neurological involvement as well – vagus nerve, facial nerve and more.
My doctor and ENT specialist here were terrible. Not only did they not help, they got in my way from helping myself. They wouldn’t give me a requisition for the imaging I needed – this is despite me spoon feeding them the idea that I had Eagles. I mean my doctor, chiro, osteo, massage can all feel the bump in my neck - but the Arrogant ENT I saw in Toronto said it was impossible. Ttotal joke.
Sounds like you do have vascular involvement if your hands change colour – but I don’t know much. Try to get the CT venography with a 3d reconstruction of your styloids. I had this requisition written by a Dr. Hauser in Ft. Myers - you can look him up online. He wasn’t super personable but he knew his stuff - they did a dynamic motion xray of my neck as I moved – and from that he saw laxity in my c spine and more importantly he could tell the styloids were elongated and told me to get the CT done before any other type of therapy.
Dr. Osborne quoted me approx. 22,000 to do the surgery. I feel so bad I have no problem paying that. Without your health there is nothing.
How did you like speaking with Dr. Osborne. I see in the forum they keep saying he has only done a few of these but he told me he does 3-4 a month. Lots of conflicting information.
All the best and keep advocating for yourself – I’m afraid the system here will not help you much.
So frustrating for you…I hope that you can get the surgery if you feel confident in Dr Osborne. I’m sorry we can’t give you more info about him…maybe he’s doing more through patients paying privately than through your health care system? Do surgeons do public & private work in Canada like in the UK?
No we have no option to pay here for anything – Horrible system. You wait months for anything – 6 months for an MRI. Basically you have to be near death before you can get anything done here. Worst healthcare system. Don’t let anyone tell you it’s good. Sure everyone gets it, but you get what you pay for - garbage.
@Jules, no, we do not have a “normal” route for private care, although Tomas has tapped into a private clinic with connections in the US. As far as I know, the only way around the legal prohibition is if the doctor works entirely in the private sector, with no support from the government at all. I know there are some private clinics where the patient pays the full shot, doctor cannot practice/bill within the public insurance system. I’ve heard of some of those doing orthopedics in Quebec, and various ones doing care in British Columbia. The other exception (which I fail to understand) is, somehow, dermatology, where the docs are able to sell private services while billing the government for others.
I forgot to mention – yes I will have to pay privately anywhere I go in the US. That’s ok – I’m fine with that. Anything to get my life back. I really just need to know I put my trust into an experienced surgeon with a proven track record.
Tomas, you’ve come to the right place. This community has an amazing directory of doctors, and real live members who can tell you about their experiences with them.
Best of luck!
Hmmm…I am a Canadian, and my family and I have far more experience with the provincial health care system than any family should. But everything that has been a problem was either common, or not so rare that there are no doctors who deal with it. Mind you, I was symptomatic for over 15 years before someone decided that there was something wrong with me.
In our experience, people who know how to advocate for themselves, get prompt help for things that need it. For non-life-threatening problems, yes, you wait. I have waited months for joint replacements. For my rare disease (yes, I’m a rare-ee too) I did endure some waits that were problematic. But in the end, when I found the right doctor for the rare disease I had, I got amazing, world-class care. That did take some manoeuvring, which I know puts people like me, who know how to advocate for themselves and “work the system”, at an advantage. And that’s not fair.
And that’s my cue to draw everyone’s attention to our new toolbox at Ben’s Friends: Patient Self-Advocacy. It’s being put up in its own category as we speak. (In fact, that’s what I was coming here to do when I came across this discussion.) But I’m off topic, so the Moderators may have to “correct” me.
Back to the issue of Eagle Syndrome treatment in Canada. I’ll just say it: IT SUCKS. And it doesn’t seem as if any province is better (or worse) than another. Our system does a terrible job on this one. There are people left suffering, or having to pay for private care out of country. As a taxpayer, that makes me extremely angry.
Just a reminder to everyone here: please don’t name doctors and give negative reports on the public board. I know you’re angry, and so am I, but that’s part of our rules, and the rule is there for ethical and legal reasons. If you do, your post (and maybe even you will be edited.)
All the best to you, Tomas, everyone reading this, and all the Canadians on this forum. I’m totally with you on this.
Seenie from Admin and ModSupport, in Ontario.
I would like to do the same unfortunately have run out of funds trying to manage underlying conditions for the last decade. our once world class healthcare system failed us.
all I know is when turning head moving jaw or shoulders that immediate symptoms happen. now have irregular heartbeat and other vascular symptoms … I was a marathon runner up until 10 years ago
our health care system is failing us. I can no longer sleep without pounding sounds and head noise. no longer able to meditate or lie flat on a yoga mat
Oh man that sounds terrible but sadly I can relate.
Sounds like Vagus nerve involvement too – with the heartrate issues
I just took a look at this. It is fantastic thank you for putting together this resource
it is correct - doctors can label us as difficult patients based on what we say and how we interact. the symptom journal is a fantastic idea
bmcdiddie, you’re very welcome. What you see here is a beta version: we have over 40 communities, but there are some that are particularly good for trying new things, and for getting feedback. That’s why we are piloting on Eagle and a few of our other groups.
Eventually we will also have street-wise guides for different countries like the UK and Canada too, seeing we have quite a few people from there. Like you and me, eh? Oh, and Tomas and … yes, we cannot be ignored. But generally, I think most of the patient self-advocacy materials are pretty universally applicable.
I’m stewing about the way our system has just abandoned you. Just not right.
I’m likely at fault for suggesting that Dr. Osborne hasn’t done many ES surgeries. His name only came up here when someone pointed us to the YouTube video of him doing external ES surgery for one of our members. This put a feather in Dr. Osborne’s cap as far as I’m concerned because the doctors we suggested he see all declined to help him because he had calcified stylohyoid ligaments but not elongated styloids. Most doctors don’t recognize calcified ligaments alone as being ES. They look for the elongated styloids. There are only a few exceptions to this in our doctors list.
We have had other members who’ve been diagnosed w/ ES whom Dr. Osborne refused to treat. Based on how he responded to them, I made the assumption that he wasn’t very experienced w/ ES & stated such. I apologize. I would trust what Dr. Osborne says about his experience over what you have read here.
I can just second that. It’s very tricky here in Canada. Sometimes I have a feeling the system is so bureaucratic, slow and avoiding doing full deep analysis/diagnosis ASAP just to make sure you don’t get better too quickly, so they would keep getting steady flow of cash from the provincial insurance systems
every time you pull out a health card in Canada someone is getting paid. it is disgusting how much hell this system puts one through just to get a somewhat simple procedure done. or even better they tell you the condition does not exist
told to watch my mood by a surgeon - seriously? I have been on a high dose of pharmaceuticals for multiple years because of underlying conditions. my sleep apnea events are extremely high most nights. I wake up choking, unable to get a good night’s sleep
I am sure if they were living in constant pain their mood would be affected too. when one can no longer meditate then what the heck? honestly - I have asked my family doctor about assisted dying because of all the pain, suffering and runaround. and it’s my fault? Canada needs change in a big way
I am really sorry for what you are going through and what you are not getting for our tax dollars.
I know you are doing your best, but unfortunately, our system is not doing its best for you. I expect better.
I have a letter in drafts which I will share with you.
Hang in there. We care, and I’m angry too.
@Weezie65, what’s happening with you these days?
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