Chiari Specialist Ontario, Canada

[Pickster1]

Hi Everyone. I am new to the site. I'm 47 and was finally diagnosed with a Chiari Malformation Type 1 by MRI in May 2017. I was told for 2 years I just had "vertigo".
Anyway... it's under 5mm however... I have a lot of symptoms so I'm thinking the CSF may be compromised. I do not have a syrinx (conf by spinal MRI) however a CINE MRI has never been done.
I saw a NS out of St Mikes (unfortunately Dr R.L. McDonald left before I could see him so I saw a colleague).  
The NS kind of dismissed my symptoms and told me to live my life, not change anything, weightlift etc etc etc and to come back only if I start to get numbness in the extremities instead of tingling. I had asked for an MRI to check for CSF obstruction but it turns out only a spinal was done. I'm doubting that this NS is truly specialized in Chiari. I want another opinion and think a CINE MRI should be done.
Can anyone recommend a GOOD Chiari Specialist in the greater Toronto area? I'm willing to drive ANYWHERE in Ontario if they're good.

Thx.
Wanda.

[Pickster1]

Thank you! Now to find someone in Ontario who's knowledgeable that I could connect them with. That's turning out to be hard. Everyone I've researched and have liked have either gone to the US or have retired or are too busy and not taking Chiari patients anymore.

[selmaS]

Good Luck...wish I could give you more info.

[Pickster1]

Fyi.... very disappointed. I did a Skype call with one of the doctors suggested. Paid good money. Got the consult report. He notes a SIGNIFICANT Malformation but then says I'm asymptomatic - despite complaining of numerous symptoms. The doc denies insomnia, anxiety (like even you noted above), passing out, lightheadedness, headaches, head pressure, tingling in extremities- I could go on and on... have anything to do with the Chiari. The consult is full of typos, he notes I provided an extensive history but then gets virtually the entire history wrong. It looks very rushed. Waste of time and money and I'm not sure where this leaves me. This is my life after all. I do NOT recommend this doctor.

[selmaS]

I am so sorry the skype session didn't pan out, I am also surprised you had to pay for it.....I was under the impression they didn't charge  or it was a nominal fee.....please let me know via a PM(private message) which Dr you used. Did you find one in Ontario?

[Pickster1]

How do I PM you? No, I haven't seen anyone in Ontario - aside from the 2 that disagreed with each other. Now, I'm not certain my doctor is going to follow up on this anymore.

[Pickster1]

How do I PM you? I cant seem to be able to do it.

[selmaS]

First send me a friend request....my settings are set for friends only.....sorry, I forgot about that.....

[Pickster1]

I'm clicking on add as friend but it just clocks??

[selmaS]

It did the same for me, but looks like it worked......

[Pickster1]

I have PM'd you.

[selmaS]

Got it.

[Pickster1]

I would love contact info if you have it. It can't hurt to ask.

[selmaS]

Below is our full list of Drs in NY,,, I told you about two.....but please feel free to check out as many of them to see who would help you in the manner we discussed.

Also keep in mind this list is not a referral nor an endorsement for those listed, the list was compiled by members here of Drs they have been to, treated by and liked.....you will have to research the Drs to see which one is right for you.

NEW YORK

Chiari Institute
Great Neck, New York
[phone]
[phone]
· Dr. Harold Rekate
· Dr. Salvitore Insinga


· Dr. Rohit Verma
University Orthopaedic Associates at Great Neck
611 Northern Boulevard
Suite 200
Great Neck, NY 11021

Tel: [phone]
Fax: [phone]


· Dr. Sol Mora
Caremount Medical Group
600 Westage Business Ctr. Dr.
Fishkill, NY 12524

· Dr. Amit Shelat
200 Old Country Rd Suite 370
, Mineola, NY 11501
Phone:[phone]


Dr. Paolo Bolognese  MD
The Chiari Neurosurgical Center@ NSP
Suite 108
1991 Marcus Ave
Lake Success, NY 11042
Winthrop University Hospital
259 First Street
Mineola,NY 11501
www.chiarinsc.com


Dr. Gregory W. Canute
Dept. of Neurosurgery
725 Irving Ave.
Syracuse, New York
(315) 464-55133

Drs James Greenspan and Fred Scialabba
North Country Neurosurgical
454 Glen St
Glens Falls NY
(518) -793-8160

Dr Chanland Roonprapunt (formerly of The Chiari Institute)
Spine Institute of New York
[phone]

Dr. Arthur Rosiello
New York Brain and Spine
24 Research Way
E. Setauket, NY 11733
631-444-9310

[Pickster1]

I don't have the brain MRI handy at the moment but can obtain it. I recently received the Total Spine MRI by email.
I've never heard of ICP, POTS, CCI, basilar invagnation,retroflexed odontoid, nor were any of these discussed with me.
Re sleep apnea - I just made an appointment to see my family doc to get a referral for a sleep study. Despite all of my complaints re sleep issues for a longtime now - trouble falling and staying asleep (even have had periods where I've been prescribed a sleep aid), I've never had a doctor set this up for me or even suggest it to me.
I'm at my wits end with the weird sensations in my head that I'm setting up appointments with Osteo's and Naturopaths - anyone I can think of. The sleep study came to mind a week ago.
The latest is "anxiety" which I've never had in my life. Instead of looking for a cause, im having pills thrown at me. Highly frustrating.

[selmaS]

Ask your Dr about NovaSom it is an in home sleep study done over 3 nights and because you are in your own bed it is more accurate......they drop off the machine and show you how to use it....I had the blood oxygen levels done in home and if they were low would have also had the sleep study done as well....it was all covered by my INS and was easy to do this way....
One symptom of Chiari is insomnia.....so it is pretty normal to have sleep issues/disturbances......
Anxiety is also a symptom.....Yup I was given pills too....don't take them....

Once you see a true Chiari specialist all the related conditions should be ruled out and discussed

[Pickster1]

Hi Selma. I just got a hold of the spine MRI. It says the Chiari is 9mm! NOT under 5mm like I was told! The brain scan (I don't have) apparently says it's 1.2cm Chiari. The original Neuro just told me this today. I don't have a syrinx. I can share the spine MRI with you. I'd appreciate your thoughts. The Neuro today said none of my symptoms are Chiari related and the size doesn't matter it's only if I'm symptomatic - like room spinning vertigo or positional vertigo or HORRIBLE headaches. I can't seem to find an EXPERT in the Toronto area. I'm lost as to what to do. I was told I have no crowding but the MRI shows some crowding. I feel lost and mislead.

[selmaS]

There are many Drs that just do not really have the knowledge as to how to determine and make a Chiari DX....it makes the journey to get a DX and treatment for those with it all the more frustrating.
As I have said Chiari is NOT the herniation but a malformation of the skull, the herniation occurs as the area inside the skull is too small....the length is also not as concerning as much as the width or if it is twisted around the brain stem....
You can try to email a Dr in the USA to get some insight and possibly ask the Dr to consult with a Dr in your area.

[Pickster1]

That would be AMAZING Selma. Do you know of a good doc in the USA that I can contact to ask to have a look at my scans? Answers and the truth about what I have or don't have would go a long way in either relieving some possibly unnecessary anxiety and/or put me on a path to know how to deal with it. As you can imagine, my trust has been shaken.

[selmaS]

I know Drs at TCI do skype sessions as well as I believe Dr Bolognese .......they are all in NY.....

[Pickster1]

I had a brain MRI that confirmed the Chiari in May. I then had a Total Spine done in July.
The original Neuro did believe my symptoms (including my falls) were related to the Chiari and not vertigo.
The NS said he wasn't convinced and I could still have vertigo. I listed numerous symptoms which we discussed BUT never made it into his report and he summarized them as mild, not a big deal.
I specifically asked for CSF flow to be checked as I understand symptoms dont necessarily correlate to the degree of herniation but to the degree the flow is impeded. I JUST found out he never did a CINE MRI.
Other than the brain and spine MRl's....NOTHING else has been done/checked. So I'm not sure about all related conditions/testing you suggested. Can you explain? Obviously I need another opinion and a NS open to this diagnosis and further testing.

[selmaS]

Related conditions such as Syringomyelia.....a syrinx.....tethered cord, disk issues, ICP, POTS, CCI, sleep apnea, basilar invagnation,retroflexed odontoid, ....
Many of the related conditions can have similar symptoms to those of Chiari......making if difficult to know which condition the symptoms are from.

Ehlers-Danlos syndrome is a related condition that is very important to rule out as it can affect how we recover if deemed a surgical candidate.

Having the CINE MRI can be very helpful to see how the flow is affected with your BP.....

Did you have copies of your MRI on disk and copies of the reports?

[Pickster1]

Pickster1
Hi Selma. I just got a hold of the spine MRI. It says the Chiari is 9mm! NOT under 5mm like I was told! The brain scan (I don't have) apparently says it's 1.2cm Chiari. The original Neuro just told me this today. I don't have a syrinx. I can share the spine MRI with you. I'd appreciate your thoughts. The Neuro today said none of my symptoms are Chiari related and the size doesn't matter it's only if I'm symptomatic - like room spinning vertigo or positional vertigo or HORRIBLE headaches. I can't seem to find an EXPERT in the Toronto area. I'm lost as to what to do. I was told I have no crowding but the MRI shows some crowding. I feel lost and mislead. I can take a pic of the Spine MRI report and send it to you.

[selmaS]

Hi and welcome to the Chiari forum.

We all know how frustrating it is to just get a DX let alone a Dr that believes that the DX is the cause of our symptoms and then find one well informed and experienced with Chiari and ALL related conditions....

So we did compile a list of Drs, the list is not a referral nor an endorsement of those listed...it is meant to be used as a tool to research Drs other members have been to, treated by and liked.

http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-CANADA/show/1270605

By spine MRI may I ask did it cover the entire spine, the cervical, thoracic and lumbar spine? Did you also have a brain MRI? ANd did the specialist also look for ALL related conditions?