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Just a quick note to say hi!
You deserve a big bear hug!
You're in my thoughts all the time, but especially today.
Thank you for everything!
Welcome to our community!
You are in my thoughts and prayers.
Hope you feel better soon!
Congratulations! Time for a celebration...
Happy Birthday!
1715590 tn?1309106525
07/11
Just a quick note to say hi! did you have numbness in your face with your chiari that comes and goes like you have been to the dentist and got a shot of novacaine
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1715590 tn?1309106525
06/11
Just a quick note to say hi! i am new to the site trying to invite friends to share my story with
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1635408 tn?1305730350
05/11
Sorry I was MIA. I became pretty frustrated and found myself becoming a hermit for awhile.  But now I have renewed strength thanks to a neurosurgeon who addressed my symptoms as Chiari.  I am going to have the surgery in June.  I'm so relieved to be taken seriously! ~Megan
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620923 tn?1452919248
04/11
Hope you feel better soon! The flu is not good mixed with Chiari...hope u get over it soon .

"selma"
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759386 tn?1324565724
04/11
Cary,

WE talked things over - he said that he is not an expert in the brain as far as chiari.  I told him of my aches and pains and so on judging distances.  

So I have an appt. with the Head of Surgery that will look at things and then we will meet on the 28th of this month.  He will I am sure give me his views on the sitaution as he sees it.  

I told the nuerologist that I am tired of "Chiari" slowly taking things from me bit by bit.  The mri did not show much change to him, he said that he looks at the brain differently than a Surgeon does.  I can not remember exactly what it said.  
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1435895 tn?1304294841
04/11
Just a quick note to say hi! I am glad you had good days at his tournament.  I have been cycling since I was diagnosed.  I have some good days where I question whether I really need surgery then it will hit me hard.  I hope you continue to have good days.  Hang in there we will get thru it!
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1179332 tn?1297482590
04/11
Well that is a nice reprieve, I wish for you that it would stay that way as well!! Unfortunately Chiari does tend to cycle...I'm glad you had a few good day away with your son..it's so nice when that happens :)
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Avatar universal
04/11
Thanks for getting in touch! Yes, unfortunately it's something that needs to be expected. It would be great if the brain stem could magically go back to where it should be (up lol) but it's highly unlikely. Are you on meds for any pain? I'm not right now as I don't have any at this stage, but I am open minded about the possibility in the future of this occurring. Think positive!
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1179332 tn?1297482590
04/11
Definitely do start a symptom list...it is sooo important. Having contact info for your specialist puts YOU in control which is a huge advantage when dealing with CM. Enough of us waiting on Drs!!

*Stormy*
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1627582 tn?1299592780
03/11
Hi hun ye I'm ok thanx. Hope your well xxxx
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1581710 tn?1306878204
03/11
I agree about this weather lol I can not wait for it to be summer!!!!!!! I hope you are doing a bit better!?!?! I did seeDr. Dang again ....he wants to do the surgery though he does not know alot about Chiari he thinks it will only help with the headaches!?!?! I think I may let him because it has been a month and a half and I still do not even have an apt date with Dr Muller in TO and I just want this fixed!!! I am suppose to go back to school in Sept (comp is sending me ) So fingers crosed I can get it done before I go to shcool!
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759386 tn?1324565724
03/11
No, nothing at all - So I am taking that as a good thing for the most part.  I am still having the same ol problems that we all have, head aches, body pains and vision problems with depth problems and blurryness from time to time.

Just aches and pains that we all have.

some days are worse than others, I am not getting much sleep here lately.

I have no idwa why however.

Roy  

My appt is on the 4th for the results.
in the morning.
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1635408 tn?1305730350
03/11
@cary19745 Thanks for the hello!!!
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1635408 tn?1305730350
03/11
I'm still getting the hang of this whole thing so I apologize in advance if I break etiquette or something. :) But hello to all of you and hope you are all have good days.
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759386 tn?1324565724
03/11
Got a call from the hosp. yesterday my mri is friday night at 6:30 p.m. it took 3 weeks for the insurance company's to okay it - primary and secondary...
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1627582 tn?1299592780
03/11
I see well I hope you get the answers you want hun. If you ever want to talk give me a shout hun.

Anna xx
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1627582 tn?1299592780
03/11
I was diagnosed in 2005 had my decompression in 2006 then in 2009 they found the cysts and I had a shunt put in C3.

Anna xx
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759386 tn?1324565724
03/11
I am hanging in there, I am having a lot of pain as the past nothing really new; waiting for the mri's to be approved by the insurance company to approve them so that they can be scheduled...  So. it is hurry and wait.  How are you doing - I am ready for spring to get here.  I am tired of this weather, snow rain wet weather.  I want mr sunshine to show up and warm this place up for a change.  I am just dealing with it and hanging in there.  What else can a guy do?    
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1581710 tn?1306878204
03/11
Keep me updated for sure!!! Also you may want to see about getting a referal to Dr. Paul Muller in TOronto (he is a specialist in CHari and is lists on the board here I had a referal sent last month though still waiting for a date :S) I am not sure if I will be able to hold out for him or not? I was in a MVA last month and things are worse for me now so it will just depend on what Dr Dang says and how long till TO can take me I guess (JUST HATE the way I feel every day !) I hope you are having more good days than bad
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1435895 tn?1304294841
03/11
Just a quick note to say hi! I hope your appt went well!  Please post an update and let us know whats going on.  I hope you got the answers you needed.  
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1581710 tn?1306878204
03/11
I am seeing Dr Dand he is head of NS at Hotel Dieu. I like him so far though he is not a Chiari specialist, there are none in Windsor I may go to toronto to see Dr Muller who is but he is about a yr to get into and I am not sure if I can hold out that long :( Who are you seeing?
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1581710 tn?1306878204
03/11
Just a quick note to say hi! Nice to meet someone who I am this terrible thing in common with who is so close!!!!  I hope you are having a good day today and fingers crossed the weather will get better and so to our symtems!
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759386 tn?1324565724
02/11
I am doing okay for the most part, my head aches are just getting more and more all the time...  I am waiting for the hospital / doctors office to call and set up MRI's of the Brain I would have thought by now after last thursdays appt.  I was told that they would call me and set them up this week.  

I am going to call them tomorrow after I wake up after my morning - early aftnoon.  As I am working from 6 at night till 6 the next morning.  I am usually up at around 2 or so.  
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Avatar universal
02/11
Hi back! Hope your day is going well!
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1179332 tn?1297482590
02/11
Hi Cary,

I had the surgery over a year ago so I am feeling a lot better and wouldn't say that my symptoms keep me home bound. Honestly, I wouldn't really have a choice b/c I have 3 boys and they are always on the go. Sometimes though, I just tell my hubby that he will have to do the run around to their activities b/c I just can't manage. On my really bad days, I have to sneak in an hour lie down (if possible) b/c I just can't hack the rest of the day if I don't. Most of the time though, I just have to fight with the symptoms and get through the day and then I crash on the recliner as soon as the kids are in bed!

I'm glad you found this site too....it is a really valuable place to find, I know when I did I felt a lot less that I was on my own.

Take care
Carolyn
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759386 tn?1324565724
02/11
Welcome aboard; the people here are great.
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620923 tn?1452919248
02/11
Welcome to our Chiari community! : ) "selma"
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