I know we do have members from Canada, not sure if they r near Ottawa tho....I know someone will comment on this thread.....
Hang in there..I am sure we can get some info for u : )
I am from Canada..but unfortunately Victoria, BC..so pretty far away. I know that there was one member from Ontario...but she had surgery a month or two ago..and I haven't heard from her in awhile.
My NS originally came from Halifax..where it looks like there is a really good neurosurgical division so hopefully you will be in luck.
If I can help in anyway...please let me know!!
I am in Ottawa as well. I was diagnosed with Chiari Malformation at the end of May. I am scheduled to see a Neuro-surgeon at the Civic Hospital on Aug 16th. I think that is when the surgery will be scheduled.
I dont have much info as of yet, but can certainly let you know when I do have some. I am thinking of bringing more awareness to the Ottawa region. Until I was diagnosed, I have no clue this even existed.
Feel free to contact me anytime if you wish!
Nice to meet another fellow Canadian...even if it's not the best circumstances. Once you have had some experience with your NS...Please add him to our Canadian Specialist list!!! We are really trying to get one going!!
Good luck in August..please let us know how it goes!!
PS(Same thing for me...most of the Dr's here didn't know it existed either and most of them still mispronounce it!!)
Welcome to this interesting world of symptoms and doctors.
My family doctor is wonderful but hasn't had too much experience with Chiari but he is receptive and very concerned.
I too saw a NS at the Ottawa Civic and he sent me back to a neurologist for further testing etc. I had another MRI this past April, apparently no change. I see the neurologist again the end of August. I tried a number of medications including Lyrica with no real improvement in symptoms but I see a wonderful physio/osteopath who has helped me a great deal with the symptoms.
I had my first MRI that found the Chiari Malformation at the Q-C Hospital but I have had subsequent MRIs at the General - I found the machine at the General more comfortable. Though I must credit the MRI department at the Q-C with finding the Chiari and the syrinx.
If I can manage the symptoms without danger then I may try to go a little longer without surgery.
Perhaps you or Selma can tell us how to contact one another more privately, and not through this open forum.
Good luck with your appointment
I too would be interested in getting some further awareness in Ottawa.
"talk" real soon.
Just click on the blue highlighted name and a box pops up...then click on Send a message.
Or, at the top of your screen in gray (beside the logout) click on your inbox, then compose a message and then type the username in that you want to send it to.
Good luck on finding a good specialist...in Canada we really need to get more awareness out there!!
Thanks so much,. I figured it was easy, I just didn't think it was that easy.
I will go for it then.
Hi, I am someone in Ottawa with Chiari, been having the symptoms for years, more so after having both of our children. I have been told that I have to go for surgery and will find out more on August 16th. I was diagnosed about a year ago, I have gone for so many tests to make sure that all the symptoms I am having is from the chiaris, which all the symptoms are cause from it. I found it hard to find information on the net about it, all that I could find was info that I didn't understand because it was in medical lingo. My family doctor was a big help to explain everything to me. My neuroligist is amazing and was very helpful in answering questions. And my neuro surgeon is great, I have heard very good things about him.
I do agree with frojenn that more information need to be put out there for us. So we can understand. Finding info about the surgery is really hard I haven't had any luck finding anything.
Jls I will keep you updated and everyone else to about what happens. I anyone has any question just let me know.
Hello and welcome!!
It's funny...carebear is the family nickname for me..too funny!! I am so glad that you have found a good NS that is willing to help you...seems to be a hard thing to find in Canada. Please, please, add your NL and NS to this link so we can help our fellow canuks :
If you have any questions about the surgery, please send me a message and I will answer any questions that you have. I had surgery Dec 29/09 in Victoria, BC.
Good luck on the 16th and keep us posted!
Hi and welcome to the Chiari forum.
Wow, another Canadian...I am so happy to hear u have drs that r working with u and offering the much needed help...soooo many of us go yrs without a dx only to get one and the dr say that is not the cause of ur issues.
Good luck on the 16th!!...we do have a thread to post ur surgery dates...and we ask that u have someone post updates on ur progress:)
Oh yeah, like Carolyn mentioned please add ur drs to the dr list for Canada.
We r happy to have u join out little family here, but not happy for the reason that u had to seek us out.
Hi everyone, I am going for surgery within the next 6 months or so. Pretty excited to get my life back. I will keep everyone updated as things go on.
So glad that u r going to get surgery.....but keep in mind, it is not a cure or a fix....it should help slow the progression, but u may not feel like the old u...I would not want u to be disappointed.
May we ask who the NS is that u r going to?...I hope that he is able to offer u some relief....
Praying all turns out with the best possible results.
Sounds like your visit went well! Did the NS say whether he was going to do all 3 procedures?
Just remember to give yourself the time to rest and recover, that is the best way to help yourself. Take everything in baby steps..and while you're waiting for surgery, try to avoid things that will make the symptoms worse.
Keep us updated!
I am going for my final MRI on Sept 3rd (the CINE one I believe) then see the Neurosurgeon again Sept 23rd. I will keep everyone posted.
As nervous as I am, I cant wait to have a surgery date.. then I csan really look forward to a new life!
cmoeller: you mentioned 3 procedures... may I ask what the 3 are?
Hope everyone is feeling great!
So sorry I havent written in so long! I saw the NS last year & had decompression surgery Nov 18th, here in Ottawa. I am still battling some symptoms & a lot of pain on my left side. I am off work still and under the care of several Drs. They are all very helpful and working together to help me.
I am hoping to start a support group for Chiarians in Canada. Please msg me if you are in Canada. I also want to start one specifically in Ottawa, where we can get together once a month.
I have joined a great group on Facebook called Zipperheads. If anyone is searching fora place to vent, ask questions or support in general, they are fantastic!
Hope everyone is doing well xo
Hi...it is nice to hear from u, but I am sorry to hear u r still having issues....keep in mind u r only 8 months post op and we all will take a diff amount of time to recover.
May I ask what issues u r dealing with?
I pray u begin to feel better soon : )
Good luck with ur local support group
I am from Ottawa and was recently diagnosed with Chiari. I have had many MRI's and have seen a NS. I was unimpressed with my NS. She didnt seem to be that educated about Chiari and couldnt give me any assurance that my symptoms were related to chiari.
Although my symptoms are what lead me to the diagnosis, they still haven't linked them together. That was kinda the point of all of this... i was hoping to figure out the problem so that I could start some kind of treatment.
My NS discussed surgery with me, but again could not say that all of my symptoms would be cured, She gave me some confidence that my headaches would be gone, but that was about it.
I am going back to see my GP to ask for another referal to a Neurologist and trying to find some good suggestions. So far, Im seeing good comments about Dr. Lesiuk.
I know that these posts are from last year, but if there is a support group or anything here in Ottawa, I would love to hear more. Im tired of being in pain and feeling alone in this battle.
Hi and welcome to the Chiari forum.
I am so sorry u r getting what we here have dubbed "The royal Chiari runaround " too many Drs r not educated on how Chiari can affect us and do not feel it can cause symptoms bcuz we had it all our lives as most Chiari is congenital.
U do need to see a true Chiari specialist to get more answers.
A NL is good for dx'ing the issue, once u have a dx u do need to go to a NS that is well experienced with this and all related conditions to get the best care and guidance.
Going to the NL u will want to have a few more tests done...rule out related conditions like a syrinx...a MRI of the cervical , thoracic and lumbar spine is in order for that, the lumbar spine MRI can also help look for tethered cord. U also want to look at the disks in ur back, sleep apnea, ICP, overcrowding and a CSF obstruction.
Since u need a well experienced Dr all we can do is provide names of Drs that members here have been to and liked, u will need to research the Dr...see a few and compare and find the one that is best for u.
We do have a few members from Canada and I am sure that they would be willing to chat with u...look for those with a recent post and send them a note or message by clicking on their name......
If u need ne help navigating let me know : )
They did find a syrinx but not sure if I have had the proper scans to detect a tethered cord. I have also been told I have sclerosis and a disk buldge, but again, not sure if this is a result from the chiari.
I have an appt. with my GP on Nov 15th, and I intend to talk to her about all of these things including another symptom which I have been experiencing for some time and wonder if it may also be related.
Narcolepsy. Does anyone know if this has been linked to Chiari? or does anyone else experience this?
Hi scoliosis is more from tethered cord*, or EDS...then chiari, but they r all related conditions.
Sleep issues r related to chiari...we all have constant fatigue and after a nights sleep do not feel refreshed.
Sleep apnea is also a concern, and u should be checked especially if u snore, or wake up gagging.
If u have a cervical spine MRI, they can deduce TC* by looking at the length of the brain stem, an elongated one indicates the possibility of TC*.
Also in Victoria,
Any info on who knows what they're doing here?
Just told this morning chairi is the cause of many of my health issues.
Hi and welcome to the Chiari forum.
A few posts up is a link to a list of chiari drs in Canada....the list is not a referral. It is meant to help u get started with ur research of the drs....u may find u have to travel as chiari specialists r not all that easy to locate.
Good luck with ur dr search ...do keep us posted.
Curious if you know of a group that meet or something in the Vancouver area? Asking since you are in Victoria. Just been through surgery and back to work but wanting to chat with someone, any ideas? thanks for your time.
my decomression surgery has been scheduled on Feb. 25th in KFSHRC in Riyadh, KSA with Dr.Faisal Alotaibi. I'm a bit anxious & I dont know if I can say hesitant to go for it especially that an ICU admission is a part as a standard precuation after any craintomy surgery in KFSHRC but still it is major surgery after all. I'm afraid of the complication & the severe headache post op knowing that I have Zero pain tolerance, I guess I want to say please pray for me to have a success surgery.