Chiari & Scoliosis

[Ang0127]

Hi everyone,
I'm new to this group and new to this whole Chiari thing. I'm suffering from real bad anxiety over the diagnosis - partially due to the fear of the unknown.
I was dx with an atypical scoliosis curve at age 14 - it was already at 50 degrees. At the time the ortho decided on surgery but for some reason, my heart told me not to. I've lived with it and accepted it for 17 years now. I've graduated university, gotten married and had a child prior to turning 30 with no problems at all.
This year, I went to hot yoga and somehow injured my neck and ribs - nothing serious but it started the tingling on my left side ( mostly leg and foot ). From there on - it became shooting nerve pains around my shoulder blades and up the back side of my head. Felt like I was getting seared. As the family doctors were trying to rule
Out a slew of diseases - and MRI confirmed I indeed have Chiari malformation 1. Now that I think about it / I believe my ortho from age 14 told me I had it. But bc i was not having issues - we all just dismissed
It.
I live in Canada where all treatment is a long long waiting list so I've decided to pay for my mri's myself in hopes of finding out more of what's going on with me. I have brain fog, forgetfulness, tingling, neck pain but most of all - panic.
Has anyone had atypical scoliosis + Chiari but no syrinx? I know with a syrinx it will
Complicate surgery. Has there been anyone with severe panic and anxiety during this time? Did your dr put you on any meds? I'm also dealing with a possible reoccurrence of breast cancer with my mom right now- so how much of my symptoms can be related to anxiety itself??
So sorry to rant on - clearly I need some good vibes my way. Thanks for listening.

[Kwstar1]

Hey thanks for the good vibes I do believe we all need them :) I am 19 and I am done growing my curve was stable for about 4 years but then out of the blue it progressed 12 degrees, so that's why we want further testing. Yes I have lots of pain with my scoliosis it's wierdi. Know some people with it have tons of pain and others none who knows but I do know Drs. Don't relly get the pain part of it. Good luck to you!

[drewlevas]

Well my symptoms are not light, but not enouf debilatating for surgery.

The first time I met him he wanted to bring me in hospital around christmas time to have surgery, but I said I wanted to informed myself first. In truth I was scared beyond words.

So he decided to watch for any cue that there is progression. So as long as it doesn't progress, there is no surgery. But as I mentionned it's been over a year since my last MRI and it might be an other 3 to 4 months before I have one.

So I'll know then if my syrinx has move or not. I hope not, but lattely my back hurt like it's on fire and my hand gets so numb that I drop everything! I mean I got a new tattoo on my hand and I didn't even felt it, don't tell me thats normal! But last time I saw him it's didn't make him think it was much!!!

[Ang0127]

Thanks again for replying...love hearing from other chiarians :)
I'm glad your NS has decided to watch and see with your situation - does that give you relief or would you rather have the surgery?  Are your symptoms not "severe" enough for them to consider surgery?  I thought I read somewhere that if you have a syrinx - it's usually an indication for surgery.
That ***** you have to drive 5 hours to see someone...but good thing you do get to see someone.  I'm still waiting to see if a NS will take me on...hopefully soon.  Have a great day.

[Ang0127]

Hi Kwstar1...
thank you for the good vibes...i'm sending you some as well - i'm sure we all need them :)
my curve is left sided at 52 degrees...but it hasn't changed in over 13 years. i read somewhere that left sided curves tend to stable off over time - especially those with chiari malformations.  not sure why...but it makes sense in my case.
i never really had back pain till about 5 years ago...at age 26 or so.  i figured it was because I was getting older...but now with all this chiari thing - i am paying for a full spine mri to figure out if I have a syrinx or tethered cord.  my ortho surgeon says that scoliosis does not cause pain??  I'm not sure if he is correct on that one...do you have lots of pain?  how old are you?  just wondering if you may perhaps stable off once you stop growing?

[Kwstar1]

Hey welcome I am pretty new here too. It sounds like you need some good luck vibes so I am sending them and hugs.  I also have scoliosis and a rare curve, I am waiting for surgery I found out my curve went up 12 degrees in 2 years. But first I am going to Barrow Institute to have some testing done to see what is going on, I have a suspected chiari malformation though and I am not sure what else. Good luck to you, one question does your back cause you pain? Again welcome and best of luck to you!!!

[drewlevas]

I didn't had surgery yet. My NS prefer to wait and see if it moves. I should have an MRI every year, but because our mobile MRI was broken for 3 month he had to write a new prescription for it. I should have my appointment soon enouf. I have syrix in the neck and in between the shoulderblades

.I live in New-Brunswick and I see the only NS who work with Chiarians in the maritime provinces Dr. Gorman. He used to work and study in Boston. The only downfall is that I need to travel 5h to get to his office and he sees me every 6 months to conduct neurological test and revew my bloodwork.

[Ang0127]

Thank you Selma and Linnielou...
You are both so informed it's wonderful. I will try to deal with my anxiety and panic attacks as I wait for more answers...I guess only time will tell. I still haven't been able to find anything on people with atypical scoliosis + Chiari but without syrinx. I'm assuming it goes hand in hand. And I guess that's what the MRI will be trying to find...hoping it's not a big one.

[Ang0127]

Thank you drew for your comment. Glad to see another Canadian here as well. Did you get decompression surgery? And if so, did you end up going to the states to do it by a Chiari specialist?  Did you also have a syrinx? I wonder who's the best in Canada. My family dr has referred me to Dr Mark Hamilton here in Calgary - not sure when or if I will end up seeing him.

[selmaS]

  Hi and welcome to the Chiari forum.

We may not have the same health system in place , but it can still take a long time to get things done in the states too....having the right Dr is key, so do look at the list of Drs for Canada and research them, see a few b4 u decine on one if u r a surgical candidate....

I do have mild scoliosis and no syrinx, but I did have a CSF obstruction, so I am sure it was a matter of time as I was having drop attacks.

  Child birth,  the hot yoga, and stress all can trigger chiari symptoms to flare...they do tend to cycle...so we can have times when they r more intense
and we can have times when we feel we have nothing wrong at all.....

Never apologize for ranting this is the place to do it safely and where others will deff understand : )

As Linda said, know u r not alone in this, and just let us know how we can help.

[linnielou232]

First I want to welcome you and so sorry to hear of your circumstances.  Yes I dealt and still deal with anxiety.  This also will cause flares us with your Chairi.  I still remember the day I first heard this word.  It does change our lifes, but once with Chairi we always will have it.  Some deal with it better than others.  Me I deal with differently everyday.  In Sept it will be my 2nd anniversary of surgery.  I do have to say I am better today than before surgery, so there is hope.  As drew mentioned getting a true specialist helps so much with the understanding and we are here to support and we defintely  understand what you are going through.  Having your mom not feeling well doesn't help matters any.  We are here for you any time.  Wish you the best and know that now you don't stand alone.
Linda :)

[drewlevas]

Hi fellow Canadian. Yes our healt system can be quite slow but if you get a good doctor it can be rushed.

Anxiety is definitivly a big symptome triger! I feel just like you. I panic and sometime cry. Try to find a doctor who understand Chiari. I don't believe that we have any real Chiari specialist in Canada, but if you happend to live near one of the metropol you'll have more chance finding a verry knowlegeable one.

I will pray that you find some answer soon, and for your mother also for at this moment I going true the same thing (my mum is battling an ovarian and uterus cancer).

And if you need to rant at anytime, do. We are all here to help. I do rant sometime on the forum :p