Thanks so much for adding that to our list! There is such a need for NS experienced in Chiari in Canada!
Dr. Hurlbert has moved to Pheonix AZ... :( Looking for a new AB specialist? Any leads?
Thank you for providing a list. My wife and I have been struggling in a healthcare system in Canada that doesn't seem to work. A Neurosurgeon in Calgary is the only Doctor who recommended surgery, however, provincial restrictions don't allow him to administer. There must be an Ontario Doctor willing to do the decompression treatment required. Thanks for the list. We'll start making calls.
Hey guys can anyone recommend a Neurosurgeon in Montreal for Chiari??
Does anyone know of a specialist in Alberta that deals with chairi?
I tried to upload but you can't do it from a phone and we just had a big storm come through this weekend and it has knocked out my wifi so I can't use my desk top. I'll have to try to figure out another way.
Thanks for your response slemaS. I wish I could show you my last MRI and see what you think. I dont think we have many Doctors up here that know much about it but I will keep trying to find one.
Hello... Im wondering if anyone can suggest a knowledgeable Chiari Neurologist in London Ontario? I have yet to be diagnosed but all of my research has led to Chiari. I had an MRI that is borderline but it was laying down and early in the morning so it was right after laying down for hours. I have read that gravity plays a role and my symptoms progress the longer I'm upright. I have been suffering for close to 25 years and have nearly all the symptoms listed even including Spina bifida. I would like to suggest a knowledgeable Chiari Specialist to my GP for referral. Any suggestions?
Hi and welcome to the Chiari forum.
I am sorry we do not have more listings of Drs in the area you need, but we can only list them as the members here find them....so in your search if and when you find a Dr please post them here once you have been to, and treated by the Dr.
Many of us do need to travel out of our area....I went out of state which was a 3 hour ride but well worth it and I would do it all over again.
Hi and welcome to the Chiari forum.
This is a thread to list Drs for Canada.....since you are in London you may want to look at the list for the Ann Conroy Trust to check on this Dr.
Have you been tested for a CSF obstruction and ALL related conditions?
What symptoms are you having that surgery was an option?
Hi there, for anyone looking for a specialist in eastern Canada, I was followed by Dr. Ayman Al-Shayji out of St. John Regional Hospital. I had surgery prior to seeing Dr Al-Shayji so i cannot comment on that aspect of his practice, but i can say that he was knowledgeable about the condition. I have included a link to his RateMDs page below. I hope this helps!
https://www.ratemds.com/doctor-ratings/88752/Dr-Ayman-Al-Shayji-St.+John-NB.html
Address:
Saint John Regional Hospital
PO Box 2100
Saint John
New Brunswick
E2L 4L2
Phone: (506)-648-6650
Fax: (506)-648-6649
Hi there, for anyone looking for a specialist in eastern Canada, I was followed by Dr. Ayman Al-Shayji out of St. John Regional Hospital. I had surgery prior to seeing Dr Al-Shayji so i cannot comment on that aspect of his practice, but i can say that he was knowledgeable about the condition. I have included a link to his RateMDs page below. I hope this helps :)
https://www.ratemds.com/doctor-ratings/88752/Dr-Ayman-Al-Shayji-St.+John-NB.html
Address:
Saint John Regional Hospital
PO Box 2100
Saint John
New Brunswick
E2L 4L2
Phone: (506)-648-6650
Fax: (506)-648-6649
Thanks for the update : )
Hi and welcome to the Chiari forum.
That name is not listed on the above thread....and if someone here went to that Dr and liked them it would or should have been added here...sorry I have no info on him.
The best thing you and your mom can do is educate yourselves on Chiari and ALL related conditions so it will make choosing the Dr to treat your mom easier.
Quickly is not something anyone anywhere in the medical profession understand....take your time to see a few Drs and make sure they are true Chiari specialists...and your mom likes them.
Hello! My mom has been diagnosed with Chiari and has been waiting to see a neurosurgeon that she was referred to in Ottawa for over a year now, she still doesn't even have an appointment. I am trying to do some research and get her a doc who will see her ASAP as she is not doing well, she's getting worse. I'm not going to sit by and wait. This is the doctor she is waiting to see:
Dr. Fahad Alkherayf
Civic Hospital 613-798-5555 ext. 10661
Has anyone seen him? How long did it take to see him?
Anyone have an recommendations that we can get her family doctor to refer her to? Someone who will see her quickly. Thank you. As long as it's in Ontario, we don't care where otherwise.
I am so sorry to hear he is worse.....Have you tried to get the Drs there to consult with a Chiari specialist here in the states?
It does sound like he has a leak, OR the area that was made larger 1- was not large enuff OR 2- was too large.
Has he had a MRI recently?
He did not help Jim.. He is worse now then before decompression. Has dismissed him. So back to begging for help. Not sure if Jim will survive this. Memory is worse, choking horrible, double vision, slurring and hard to understand. Sent Jim back to Neurologist that had scratched his head for two years saying complex case. He only suggested. Geriatric shrink. No dam clue on any of this. Anne
Yes Jim was told for 4 years he was leaking fluid as the reason his first cat scan showed his brain was not sitting where it should be. Now I feel so disappointed. Prokupa said his surgery was a sucess and the cause of his symptoms still causing problems. Said he figured the cause was Syringomyelia that did not shrink like he thought.
Now to find a passionate specialist that acts like he cares. Any help for ontario is so needed.
Not happy with Dr Prokupa. Jim's symptoms returned so quickly after surgery. Surgery was end of Sept. He had an MRI and today Prokupa had no reason as to why Jim is so bad. Almost worst. Said he was done with his part. Suggested we go to a Neurologist that Jim saw for two years while adding new symptoms. Basically scratching his head saying complex case. Said it was probably due to Syringomyelia. Jim has two that apparently did not grow but did not go small like he expected. He is on the internet as a specialist. Yet dismissed Jim today.
Not sure what to think. I am in shock. What do I do, where can I find an approachable Dr that cares. Anne
Thanks for the update, but so sorry to hear so much is going on....
Praying it is not urgent and you get the Dr and care you need...soon. <3
Hi Selma (and all),
I am cancelling the gym - I'll be happy to go back to my old symptoms forget weight. My neurosurgeon found a swollen optic nerve on checkup (the eye that's been hurting me for months and experienced oscillating Scotoma twice last year) so I'm seeing a neuro ophtamologist next and will fill you in... I'm not a surgery candidate but if the eye is from compression (I think I am slightly more herniated on left eye side) then saving my eye is priority. My neurosurg is retired in terms of operating so I gt get referred to Dr. Macdonald at St Mikes as his resume impressed me. Supposedly end of the year wait time :O. This flare is so chronic that I am not sure how things will turn out for me lol... Maybe urgent... Ttys :)
Hi and thank you for the update.....and Congratulations on the Wedding!!!
There is info on Chiari and pregnancy...google the name Diane Mueller, she is a nurse and works with Dr Oro and they have co-written books and one she has out is on Chiari and pregnancy.....
I would listen to your body and cut back on the gym as you already noted you are heading toward more pain.....that is the bodies way of saying it is not ready for all that....
It is possible for one side of your body to be affected...my Dr explained that you can have more obstruction on one side so it affects one side.....
I always seem to have more issues on my left....
Hi Selma,
After a year break from the gym, I was very hopeful. I also barely touch booze now and my migraines literally are extinct due to that alone (I act also stopped dying hair, those two were top triggers for a decade lol)... However I piled on some weight and am back on track, and so is the neck pain and that itchy back of skull feel inside the head from flow issues I bet.
I also got married last summer and keep googling childbirth options for Chiarians. I do use my voice a lot at work and it does give me Ice pick back of head pain. I'm being stubborn and using leg machines as high as 60lb... I have to get into swimming instead or I'm setting myself up for hell.
My left eye pressure seems more prominent too... Its the gym. Unbelievable. I wish there was an easy way to check pressure without spinal tap but I still don't understand how it's only felt behind my one eye :O
My thoughts are always with you you dedicated sweet lady. The chiari.ca news are great :)
Hi Missyorkie...
Are you in Kingston Ontario by chance?