Hi, Newly diagnosed a month ago. New Dentist picked it up in a pano x-ray. I have documented my textbook symptoms tho in dr and specialists notes for 20 yrs. Pain in my brain, occipital neuralgia among other things. Had been in Nsaids and TF Biologics… Dr Whitterick at Mt Sinai is not accepting any more ES patients I learned yesterday. I need to see someone soon, 20 yrs is long enough. if anyone has any suggestions I would be very appreciative.
That’s such a shame- we’d heard good things about Dr Witterick. Have you tried Dr Monteiro at the same hospital- some-one had suggested that he may treat Eagles patients?
Otherwise have a look at any Otolaryngologists in your area, as they operate in the skull base area, otherwise any neurovascular surgeons who specialise in the head and neck area?
Thank you for your reply. As of today i can report that Dr. Whitterick at Mt Sinai is no longer seeing patients with ES. Alos Dr. John Yoo in London is no longer seeing any patients. I have emailed every secretary/ENT at Mt. Sinai today waiting for responses hopefully. I will keep you updated. At present however my family doctor has sent my referal to St Michaels Hospital some dept.? I will nail down doctor on this while i wait. Thank you sincerely for your support ️
Hi Danni, I don’t have info at this point but I’m a Toronto resident as well. I don’t know if it’s Eagle’s that I have (just now starting my diagnostic process) but I will keep you in the loop if you’d like to connect privately.
Wishing you a good day!
I am from Alberta and I am still waiting for an appt date with the ENT that I was referred to… perhaps I’ll be lucky and he will have heard of this or had experience!!!
Any Canadians have any luck finding a doctor for ES? Just wasted 9months with Dr Vescan at Mt Sinai in Toronto. Who said I have ES but he won’t treat it. it’s not causing these issuers for u. i asked how long the stylods are? He said that was not note on the 3D CTCaan i’ve noted ES symptoms gor 20 yrs. Vasculaur kind. Today’s a bad day - neuralgia in ear, jaw, occipital region. tinnitus is very loud and brain fog. soooo tired and now incredibly discouraged. any one? pls
i’m would like see dr samji ( he’s from my home town ) does anyone know how i go about getting an about
also Jules I have AS / Anklosing Spondilitis
(30 yrs) and noted you have some members w AS on here? i find that correlation very interesting! As Spondyloarthropathies cause arthritis at the points where your bones connect to soft tissues like ligaments … ES???
and tendons connect to bones and muscles.
Is there ever a way you could take a poll? As AS, Crohns, psoriasis, reactive artworks are in the Spondyloarthropathy family. I know a simple blood test was a big marker for AS, it’s HLB27.
thank you for any help you could in helping me getting to Dr. Samji✌🏽
Danielle in Toronto
Dr Samji’s details are in the latest doctors list: Latest Doctors List 2017
Here’s some info about what scans Dr Samji needs: CT neck non-contrast “styloid protocol”?
You could start another discussions to ask about the ankylosing spondylitis, see if any other members respond? Or use the search facility to look through past discussions- just use the magnifying glass icon, top right of the page. We’ve had members with other connective tissue disorders like Ehlers Danlos syndrome.
It’s hard when you have vascular symptoms, been there! It can take a while to get anywhere with doctors- & even experienced ones aren’t always aware of some symptoms we get! But hang in there & try to keep strong; if you think you’d be able to get to Dr Samji then that’s great, he does phone consults, so you wouldn’t have to keep travelling to see him. Lots of members have stayed nearby after their ops, if you are able to get to see him Isaiah40:31 can give you suggestions.
Grrrrr…makes me so angry when the doctor tells one of us that ES can’t be causing our symptoms!!! I’m so sorry you are having to deal with this and suffering through long periods of time between doc appts. I too have been suffering with this evil for more than 20 years! I know it is exhausting, but hang in there…we haven’t suffered this long for nothing. I’m afraid it’s a long hard road even after diagnosis as you have already started to experience. I’ve been to see 2 potential surgeons and wouldn’t dream of letting either of them touch me. I have had more surgeries that one person should for various things and I am not interested in going to the wrong doc to have this done and then have to do it over. I am just going straight on to the expert as soon as I can get it arranged or accepted by Dr. Samji. Don’t know what will happen if he doesn’t but I’m trying not to think of it. Your symptoms sound much like mine and when I started having vascular symptoms over the last couple of years, I started to get more aggressive about finding out what has been plaguing me for most of my life. Finally I was diagnosed in April of this year by the same ENT I have been seeing for more than 10 years.
Just keep working at it and moving forward…one foot in front of the other! Keep the faith and know help is out there!
Hi Danni -
Dr.Cognetti is closer to you (Philadelphia, PA) since you’re in Toronto. He is also an excellent surgeon. His surgical philosophy is a bit different than Dr. Samji’s, but his patients get pretty consistently good results from the ES surgeries he performs.