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Chiari post surgery life!

Hello everyone, my sis got surgery two years ago but now experiences very strong symptoms ranging from chronic pain to dizziness and loss of control aver arms or legs....can anybody share similar experiences, suggestions about how to live this situation??

thank you
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620923 tn?1452915648
COMMUNITY LEADER

  Thanks for posting to this thread....I appreciate it and I know the poster will as will.

Miss u here : (
Helpful - 0
1179332 tn?1297478990
Hello!!

Sorry it has taken me so long to answer!! My NS was Dr. Richard Reid (he is on the Canadian list I think) I had a really good experience with him and he knows his stuff. I would definitely recommend seeing him.

I'm curious on how you got diagnosed? It seems where we live most NL don't even know about Chiari and if they do, they don't recognize it as a problem. I didn't get dx'd till I saw Dr. Reid and my dx was still not supported by my NL.

However, I find it comforting that things seem to be getting better in BC regarding Chiari.

Please feel free to message me personally and we can share contact information. I do know a few other Victorians with the same dx so I would be happy to offer you support.

Take care
Stormy
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

Hi and welcome to the Chiari forum.

*Stormy* has not been active on this forum for a while, but I will get a hold of her to find out for u.....we do have a list of Drs for Canada that u can use to research Drs...just look for the list of Drs in the Health Pages and clink on the link to the Canada Drs list keep in mind these lists are not referrals.http://www.medhelp.org/health_pages/list?cid=186
Helpful - 0
4390123 tn?1353870193
I live in Victoria BC, who is the NS you know here? I am newly diagnosed. Any information would be greatly appreciated. Thanks!

Helpful - 0
1179332 tn?1297478990
Hello fellow Canuk!!

I am only two months out of surgery so I haven't had the experience of being that far along. However, if these are thing that have just shown up again then I would definitely urge your sister to go back to her NS to make sure there isn't some kind of reblockage.
Are they still doing follow up MRI's or visits?
I have a great NS in Victoria, BC but that's a little far away... As for a true Chiari specialist in Canada..from my experience that is non-existent but if someone knows of one, I would love to hear about it!!
I hope that she get some answers soon...you are a great sis :)
Carolyn
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

Wow, ur sister is lucky to have such a strong advocate in her sister.....

May I ask a few questions?...where did she have her surgery....and do u know, was she looked at for other possible related conditions like tethered cord, syringomyelia, EDS, DDD, PTC,...and a few others?

Some can develop scar tissue...when was her last MRI of the surgical site?

It is possible too, that she has a condition called  brain slump...and she may need a re do......they r many things that could be going on...and a chiari specialist is where she should be.

We do have a few members from Canada, but not sure about how to get to a true specialist up there......

SO glad to have u here and it may also help ur sister to join us for we can offer her support in her knowing she is not alone.

"selma"
Helpful - 0
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