Hi I wanted to get a list started for those of you in Canada...I am not sure if these drs r indeed chiari specialists, but found their names listed on another chiari site.Please RESEARCH all drs and do not take this list as a reference.
Let us know if u saw ne of these drs and what thought.
Dr. Rudolph Arts
Dr. Paul Muller
Chief of Neurosurgery
St. Michael's Hospital
Calgary, AB, Canada
Sick Children's Hospital
Dr. Richard Reid
605 Discovery St.
A really great person and an excellent surgeon, comes highly recommended!! I don't think he is considered a "chiari" specialist but he had a really good knowledge of Chiari and what effects it can cause...in my case he was also the one who dx'd it.
I just had my surgery March 27 2010.
Dr Shamisa who is the top neurologist and also works out of Hotel Dieu hospital in Windsor Ontario preformed my surgery. He is very compassionate & caring individual who takes his time and explains things thouroghly to you and your family. He is great and I would recommend him to anybody!
Hi there may well be, but our list is only of the drs that the members have been to and liked....this is not a referral, but a means to help u get started with ur research of Drs.
I have found soooooooooo many lists of Drs online only to find that the Dr is retired , or is not a chiari specialist.By creating our own list we know these Drs treat chiari....and we do try to update it when we hear of a Dr that retires.
I just wanted to add a name of the neurologist I saw today, who was totally amazing, and actually officially diagnosed me with symptomatic Chiari Type 1. He was totally knowledgeable about Chiari (he actually brought it up before I did) and reviewed my MRIs, confirming that I have definite crowding at the foramen magnum, and most importantly finding a 2mm syrinx at the C2 level that two other neurologists and various hospital staff had managed to miss, even though it's definitely visible on all three of my MRIs! He also sent in a referral for me to see a neurosurgeon today, too. Amazing doctor, can't recommend him enough!
Dr Zahir Dhalla
1 Centrepointe Dr (#301)
Yeah, I figured it could help out a bit; info for any neuros in Ottawa is basically impossible to come by, so hopefully if someone out there is stumbling around looking for a neuro in Ottawa that knows his stuff and doesn't have to google Chiari, they'll at least have a lead. :)
I just wanted to inform you that Dr. Ramesh Sajhpaul is now in North Vancouver BC. He is the neurosurgeon who I was sent to. I am due to go back and see him again in a couple of months. He was informative ( I now know more about my condition than I have in over ten years).
The address is:
Dr. Ramesh Sajhpaul
#405 - 125E 13th Street
North Vancouver, BC V7L 2L3
(604) 904 - 7467
Just had the Chiari decompression surgery with duraplasty. Done at the Calgary Foothills Hospital, by Dr Jacobs Bradley. Surgery was on a Friday, I wanted to leave Saturday but he said to wait one more day, which I did & left Sunday. Kicked back at home for a few weeks & all is good. Had a sryinx between my neck and shoulder blades which made my whole back hurt, needed heating pad for hours aday, as far as I know all pain has gone not sure about pressure head aches, because I have not done any physical activity yet. Darrrich
May I caution u to do too much, as it is typical to feel so much better directly post op, but as u begin the healing process u may experience some of ur symptoms resurface...this is common and normal.
Just do not count ur chicks b4 all the eggs hatch, if u know what I mean...take it slow, do not over do it, and give ur body time to heal even if u feel better then b4 surgery, other wise u may suffer a set back.
Glad to have u join us, sorry for the reason that brings u....
Thanks I should have joined sooner, lol.
Did have a slight set back three days after surgery, by doing too much. NOT the doctors fault, but MINE. Spinal fluid started to leak from the patch inside. Two days of not doing anything stopped the pain. Lesson learnt. Kicked back for a few weeks now. Surgery was May 4th, 2012. Just a note, I found, opening the blinds and getting off the couch is just as hard as the surgery. Oh & getting off pain meds that I'd been on for 6 years. Not sure if this is alot to other people with my condition but all i 'm taking now is 10mg morph at 9am & same at 7pm. Will cut that back to 5mg for a week then hopefully zero a week after that.
Sounds like u r on target for the pain meds...and it is sooooo easy to over do it bcuz we have pain meds in us we do not feel all that may be affected by what we do, once u do stop all meds is when u may feel things, so go slow, and allow urself to heal.
I am 3 yrs post op as of yesterday, and I am still seeing improvements, compared to last yr....it is amazing how we continue to heal and grow stronger...mind u, I do not do much as I listen to my body and mine screams at me as I do have other related issues too...but I feel soooo much better.
Whats strange is, I feel good for couple days, each day I do a little more. Then for two days i can barely move because i'm sooo tired. Any who just wanted to hi and thank you for your info. You are very busy with this website & I'm sure everyone thanks you & love's you for being so.
Well that is common as chiari symptoms do cycle so it may be that as u r healing u r still in the cycle mode.
It may be that way for a while...u learn to gauge what u can do and what u have to do and how to reserve ur energy to be able to do what is needed and u can rest up to do what u want...and save days to rest up after....
my pleasure! i've actually created a facebook page to centralize everything (lots of friends and family were asking, so this made it simpler for me) and i mentioned this on my profile page on here - should i put it up anywhere else, you think? i also added some pics on my profile here, my scar's healing super fast! :)
Dr. Tator at the Toronto Western Hospital only does consults but I am sure if surgery is warranted that someone else took over. His consult is worth every minute of your time. He knows the protocol and will issue further testing if needed (I'd know as the Oakville hospital sent me home with a low dose of tricyclic a/ds which I of course did not take, instead of a spinal MRI to follow up on my 12mm herniation).
Dr. Tator's Contact #:
His receptionist's name is Maria and she's very proactive and pleasant.
I am new to this site. I had a MRI years ago, and my family doctor at the time didn't take my symptoms seriously. My symptoms are worse now, have a new doctor due to the sudden passing of my former family doctor.
Whats the best way to get my family doctor to refer me to a neurologist that specializes in Arnold Chiari?
I live in South Western Ontario, so the London area would be the best location for me.
Also, what is the most popular pain relief medication that people find work best for them?
Thanks for your input.
I can't help u with Drs in the area u r looking for, but I can tell u that u may have to travel out of ur local area to find a Dr well experienced with Chiari....this above list is compiled by members of Drs they went to and liked so it is not a complete list, u can use this to research Drs, mayb one of these Drs knows of one in ur area.
As for meds, for myself and many of the members no med really helps the pain pre op...and if u r a surgical candidate u will find that we need pain meds post op too....Chiari is life altering....and depending on the symptoms u r dealing with meds do not always help.....
Hello, I am newly diagnosed, following a rear end car accident. I am in my fifties, & have been healthy & active ( skiing, cycling, swimming etc. ) until this accident changed my life. I also live in Victoria B.C. & noticed your surgeon is here in our city. I was wondering how you are doing & if you still recommend your surgeon. I really hope you are still doing well.
Hope to hear from you soon, thank you so much. I am frightened by all this, & appreciate support from anyone.
Hello, I also live in Victoria B.C., am wondering how you are doing & if you still recommend the surgeon you had . I hope you are doing well.
I am newly diagnosed & am of course frightened by this.
Thank you so much.
I definitely still recommend Dr. Reid, he is an amazing person. Please feel free to PM me, I would be happy to share any info I have. I will be here for 5 more days and then away for two weeks so if I don't answer right away that is why. I do know a few more people with Chiari in Victoria, believe it or not. It is very scary being diagnosed with this but I am hoping I can help you with that by answering questions you may have. I am now 31/2 years post op and though there are ups and downs, I am doing well:)
My NS is in Calgary as well. I can't call these people specialists in Chiari, at least by my definition. I believe they can do the surgeries required, but in my opinion they don't now a lot about the condition itself other than how to fix it. I asked my surgeon a few questions and all she would tell me was there is no absolute cure and nothing you can take to make it better. Surgery is the best option if you have a blockage of fluid and that's about where we left it. I saw two surgeons for second opinions before I made my decision. That being said I consider her a competent surgeon and she will be operating on me in 6 - 8 weeks.
Dr Clare Gallagher
,Can you tell me more about Dr. Pokrupa.. My husband has him at this time after being told for over 4 years his leak was just a complex case.. I would appreciate any and all information.. It has been a very long 4 years for us.. He started with a leak, went to Chiari malformation and syringomyelia x 2.. these are so very dangerous. thanks so much
Hi as I mentioned in ur other thread, the names of these Drs are added as members have reported they have been to, treated by and liked the Dr....that is all the info I can offer since I am not from Canada and have not met this Dr.
I would advise u to research the Dr...best way..call the office, when u ask if they treat Chiari , syringomyelia, tethered cord, ehlers-danlos?....if they ask u to spell ne of it or repeatedly as u to repeat it, it may be that office does not handle these issues that much....or it could be a new office person, so do try and see what the Dr has to say...so educate urself so u can better identify a Dr well informed and experienced.
May I ask, did ur DH have a CSF leak with no known cause? and it developed into Chiari or is it congenital?
On the other post I suggested a few areas in FL u might want to look for a Dr, ur profile indicates u r in FL....sorry for my mistake....*Stormy* is no longer an active member, but u can try sending her a PM (private message) which will generate an e-mail informing her of the PM....
Sorry the list for Canada is so small....not many come back and add their Drs to this list....but we do try : )
I wish I could help but I live in BC on Vancouver Island so I have not heard of this DR. Generally though, I am told there is a lot more choice where you live when it comes to knowledgeable Chiari Drs. If your NS is not giving you the info you need then I recommend getting a second opinion. I will see what I can dig up on him and any other good NS and get back to you.
Take care, your hubby is lucky to have you in his side:)
Just want to announce that there is now the Canadian Chiari Assoc & we are working in partner with various Drs. We have 2 neurosurgeons as medical advisors as well! I want to share this news as it means you're being heard! Doctors are seeing that there's a need for awareness and understanding.
Our website is www.chiari.ca
Feel free to message me anytime! I'm from Ottawa and currently living in Kingston, ON. My neurologist is Dr Rabinovitch and my surgeon was Dr Agbi. I highly recommend neurosurgeon Dr Sinclair at the Ottawa Civic! He is an amazing man!!
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 :)
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 :)
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
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.
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
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