Hi all - first post… For the past 5 years I have been dealing with pain in the side of my head, tingling sensations in my face, and a trigger when I lightly touch my hair line it causes weird sensations in my cheek - like a feather tickling my face, or a string being pulled through my skin. The pain has periods of remission, but over time slowly gets worse as does the facial sensations.
I have been diagnosed ATN by one neurologist, but told by another that I am having issues with nerves but not necessarily TN/ATN.
I’m at the point where I just desperately want to see a doctor who deals frequently with ATN / head/face pain and provide a diagnosis and next steps. I live in Canada and have read about great doctors, but they tend to be neurosurgeons.
So… I have 2 questions:
Can I see a neurosurgeon for diagnosis, or does one only get in with a neurosurgeon once a neurologist has referred them for surgery?
Anyone know a good doctor anywhere in Canada for my situation?
Thanks!
Ryan, Canada’s a big place and (for starters, anyway) you’re going to be restricted to someone in your home province, which is Ontario. I suggest that you change the title of your post to specify “Ontario”.
As you would expect, the biggest centres of excellence in Ontario are in Toronto. Toronto Western Hospital has a dedicated TN clinic: http://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Pages/trigeminal_neuralgia.aspx
Why not contact them and see what they suggest in order to get yourself referred there. My own experience at the University Health Network, which is with their Psoriatic Arthritis clinic, has been outstanding. This is where the province’s specialists’ specialists work. I cannot say enough good things about my experiences there.
Here’s another resource that you may already know about.
Best of luck with this
Seenie from Moderator Support
Thank you very much for the reply. I have 2 questions for you: Are we
restricted to our home province? And is there a Canada group/forum on the
website where I could ask?
Thanks, Ryan.
Here is the information on getting OHIP funding for out of province medical services:
There is no Canadian group on this community, and unfortunately there is no way of searching geographically. If you go to the tnac.org website, you will see under support groups that the president of the organization is Cornwall. She would probably know a lot about the TN network in our neck o’ the woods. She is:
I think your best bet at the moment is getting your doctor to refer you to the TN clinic at Toronto Western for a consult. Meanwhile, gather as much information as you can.
I am in Ontario too. On the other side of Kingston by Cobourg. Definitely get a hold of Jane. She is very knowledgeable. There are support groups in your area as well.
I am closer to Toronto so I have been to Toronto Western. I was diagnosed by a neurosurgeon there with Type 2. They referred to a facial pain specialist neurologist…Dr. Peter Watson in Etobicoke. He is great.
There is also a very active group for TNAC on Facebook. There are other people from your area on there and I know they see DRs in Ottawa:
Thanks very much for replying. It was actually Dr. Watson that I was seeing
for the second opinion! He was the one who hesitated to label it ATN, but
was sure it was head and facial nerve issues. Unfortunately, he retired
last Spring which is unfortunate as I really liked him. Since I saw him
last things have worsened so I’m really ready to find another doc. I called
Toronto Western yesterday and I also emailed Jane.
Thanks again for your help.
Dr. Watson did keep some of his TN patients on after he retired. Sorry that he wasn’t more help to you. It is really hard to get a definitive diagnosis if your symptoms are “Atypical” in any way. I have been on the merry-go-round for three plus years with Drs, neurologists and such. All they want to do is prescribe meds. There isn’t much else they seem to be able to do with us. I am trying MMJ next and have a referral for a clinic at Women’s College in Toronto and another referral to a pain clinic in Kingston. I also have physio and acupuncture every week which does help. It sounds like you are a good advocate for yourself. Don’t give up!
ATN is really tough for initial diagnosis. I have seen Dr Alan Gordon at the Wasser Pain Clinic at Mt Sinain Toronto for 15 years. He is a neurologist which works for me. I don’t want surgery. I started with ATN and still have it. I also have regular TN. Mine is bilateral and 5 points on both sides.
I use acupuncture as part of the treatment plan to deal with the TN. There are 5 points at the forehead/scalp area that are fabulous for controlling this for me. I learned about the location from another person in this group a long time ago. T’Hayla Ferguson has been amazing as part of my pain management team. I never would have tried acupuncture if Dr Gordon had not introduced me to it.
Hello Fellow Ontarians
Now that Dr. Gordon is gone what are you doing,Quest?
And Ryan have you had any luck finding someone?
I am a ship without a rudder right now.
Spinning in circles.
Any advice from Ontario would be appreciated.
And has anyone tried NUCCA?