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620923 tn?1452919248
CHIARI DRS LIST ~~~~CANADA
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.


CANADA

Dr. Rudolph Arts
Neurologist
Barrie, Ontario
(ph) 705.721.1060

Dr. Paul Muller
Chief of Neurosurgery
St. Michael's Hospital
Toronto, Ontario
(ph) 416.864.5590

Dr Hurlbert
Neurosurgeon
Foothills Hospital
Calgary, AB, Canada

Dr. Rutka
Neurosurgeon
Sick Children's Hospital
Toronto, Ontario

Dr. Ramesh Sahjpaul
Neurological Sciences
339 Windermere Road,
London, Ontario N6A 5A5
(ph) 519.663.3706
(fax) 519.663.3753
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Page 4 of 4
2193242 tn?1338398430
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.
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620923 tn?1452919248

  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....

Just know it will get better : )
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hey there,

i just had my surgery early november, and already i'm feeling pretty fab, even if recovery is still a huge pain...  :)

i had Dr Amin Kassam at the Ottawa Hospital - Civic Campus on Carling Avenue.  he's a super nice guy, and an amazing surgeon.  very busy but well worth the wait!
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620923 tn?1452919248

  Thanks for the update on urself and the info on this Dr...I hope u r able to add more info on ur recovery.
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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!  :)
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620923 tn?1452919248

Not necessary, but u could copy and paste some of that info in a journal here....I saw ur pics and ur scar is looking great !!

Or u can add links to ur FB page under ur pics.....
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awesome, thanks!
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620923 tn?1452919248

  BUMP
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620923 tn?1452919248


  BUMP
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Re: Dr. Fred Gentilli

I was referred to him but didn't feel he took my symptoms seriously or was of great help. Did you feel otherwise?

Following that I requested:

Dr. Julian Spears
Julian Spears, MD, SM, FRCSC, FACS
Tel: 416 864-5667
Fax: 416 864-5644
Email: ***@****

I felt better with him as he took more time to speak with me and was concerned about my quality of life.
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just an update

Dr Paul Muller in toronto st. michael"s hospital is retired.
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620923 tn?1452919248

  Thanks for the update : )
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1386992 tn?1371607904
My neurologist is

Dr Rabinovitch
1 Centrepointe Dr   Suite 406
Ottawa, ON K2G 6E2

(613) 228-4298

I would recommend Dr Kassam as well. I have met most of the surgeons in Ottawa and he is one of the top! (if not at the top!)
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Hey Everyone,

http://www.uhnresearch.ca/researchers/profile.php?lookup=5950

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 #:
416-603-5889
His receptionist's name is Maria and she's very proactive and pleasant.

Good luck...





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620923 tn?1452919248

  Hi thanks for the info.

How are u doing?
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Hi,
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.

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620923 tn?1452919248

Hi and welcome to the Chiari forum.

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.....
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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.
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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.
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1179332 tn?1297482590
Hello

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:)
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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
Foothills Hospital
Calgary, AB
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Not sure if you will receive this , but how did your surgery go in Calgary , I'm in Regina
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620923 tn?1452919248
To contact a member on an older thread send them a PM (private message) this should generate an e-mail notifying them someone is trying to contact them.
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,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
Anne
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620923 tn?1452919248

  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?
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I am from Ontario.. having little luck and not much support so far on my husband.. any help is appreciated here.. the NS we are seeing is not interested in explaining much.
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620923 tn?1452919248

  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 : )
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How did you find Pokrupa.. he does not seem to want to find the root of the problem with Jim.. thanks any help will be great
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620923 tn?1452919248

  Sorry for any confusion, I am not in Canada and have not been to this Dr....I am trying to contact one of the members for u.....

and I am so sorry this Dr is not helping, may I ask what all are ur DH's symptoms?
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1179332 tn?1297482590
Hello

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:)
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620923 tn?1452919248

  Thanks *Stormy* <3
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1386992 tn?1371607904
Hi everyone!

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!!
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1386992 tn?1371607904
Hi Missyorkie...

Are you in Kingston Ontario by chance?
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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 :)



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620923 tn?1452919248

  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....
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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 :)
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620923 tn?1452919248

  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
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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
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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.
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there is little to no doctors experienced  with chiari malformations in Ontario im finding..seems to be hit and miss if they have even heard of such a thing..
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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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620923 tn?1452919248

  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?
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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.
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620923 tn?1452919248

  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.
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620923 tn?1452919248

  Thanks for the update : )
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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
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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
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Hello.  I will be having my surgery on April 10. At UH in London. Dr Wai Ng is doing my surgery.   I was trying to find out if he has done this operation before.   My nerves are setting in and want to make sure I am in the best care.  
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620923 tn?1452919248

  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?
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620923 tn?1452919248

  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.
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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?
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620923 tn?1452919248
Hi and welcome to the Chiari forum.
The only Drs we know about are those that members shared here on this list....and it is here only for you to use to research the Drs.
You may have to travel ..many of us do, I am in the US and traveled out of state for my Dr and that was a 3 hour car ride.....
The MRI being upright is really only needed if y7our herniation is on the smaller side....but the Dr if a specialist should be able to detect Chiari as Chiari is not the herniation BUT the size of the cerebellum. The herniation happens as a result of the area being too small.
Also a CINE MRI may help as it is the CSF obstruction that needs to be detected...if you have one and then MRI's to see if you have a syrinx or any other spinal issues.
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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.
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620923 tn?1452919248
you can take a picture of your MRI or upload it to your profile page in a photo album....not sure I will be of help, but am willing to look to see if how my Dr showed me my issues I could look for those....but minute issues and details are above my abilities....I could spot a syrinx and low lying tonsils...but I can not say for sure if it would be classified Chiari as I am not sure how to detect that.....
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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.
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Does anyone know of a specialist in Alberta that deals with chairi?
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