Hi im new and i have Chiari!

[rachel_ahemed]

I was just wondering if there are any others here with it?

[selmaS]

Below is ur question to me-
' You mentioned that if cranial instability is left untreated that fusion surgery is done. Approx how do u know when its time for that? And is there another solution to fix this? Ive been tellin my family I feel like a bobble head, so its funny to hear someone else say that too.not really funny but u know what I mean.'

My statement was
[ The other problem with cranial instability is our heads not only bobble but, slide down on the odontoid and compress the brain stem and brain if left untreated...surgery is usually done for this...it is a fusion .]

So I did not say if left untreated surgery is  done, I said if left untreated the skull can slide down on the odontoid  and compress the brain stem and brain...so for that reason surgery is usually done.

Most with this issue have a condition called Ehlers-Danlos...were u dx'd with it?...if not, u should be seen to see if this is a possibility and if so, ur NS would have known cranial instability was highly likely as a result of the PFD and informed u about that....

  There is testing where they put u in traction....see this older thread for more info-http://www.medhelp.org/posts/Chiari-Malformation/cervical-traction/show/800150

    "selma"

[jenniferlee448]

Hello Rachel Im also pretty new and waiting on my daughters results. She is already dx'd with syringomyalia.They are also looking for where the obstruction of flow is. Being pretty new here I also have been a little nervous but everyone here are very caring and will always listen to what you have to say. Welcome

[linnielou232]

Well if you found out you have Chairi you have found the right place to come.  When I found out I had Chairi 2 year's ago.  I found this site and it was so helpful to me and it still  is.  It's nice to talk to people who can relate to what you are going through.  I also decided on having my surgery a year ago due to all the information that was given to me here.  I welcome you to our Chairi family, and  I wish the best for you.  I hope  you have found a good Dr. that know's a lot about Chairi.  It is a serious illness which I didn't understand it when I first heard I had it.  Pretty scary stuff and a lot of information you have to look into before making any decisions.  We are all here to listen and to support you.

[Reanna_R12]

Hi Rachel...I was also diagnosed this week....I am 27 years old and have been dealing with chronic headaches my whole life and now chronic neck and back pain, dizziness, numbing and tingling in my hands and arms, nausea and much more.

Reanna

[Sexybare]

You mentioned that if cranial instability is left untreated that fusion surgery is done. Approx how do u know when its time for that? And is there another solution to fix this? Ive been tellin my family I feel like a bobble head, so its funny to hear someone else say that too.not really funny but u know what I mean.

[selmaS]

  Cranial instability is when ur ligaments r very lax ad do not hold ur joints stable...and ur joints can over extend...some  r called double jointed...joints can pop in and out of the socket....

When we have the decompression and they do the laminectomey of the vertebrae  the head tends to become like a bobble head in that the head is not well supported...car rides etc...can be very diff  to do as it will cause HA's and this is y I always travel with a large fluffy pillow to help support my head on longer car rides....

The other problem with cranial instability is our heads not only bobble but, slide down on the odontoid and compress the brain stem and brain if left untreated...surgery is usually done for this...it is a fusion .

[Sexybare]

Hey I also have chiari. Welcome. You are not alone. Can u tell me what is cranial instability, for I myself have been having issues since my decompression in aug.

[selmaS]

  Hi and welcome to the Chiari forum.

  Yes, do not believe this is a rare condition like the web reports indicate.....I saw on ur profile u already had decompression surgery and r now dealing with cranial instability......

This is a good indication u have Ehlers-Danlos...have u been tested for it...it affects the ligaments that help hold the joints stable....they become overly stretchy...making them unstable.

I also had surgery and have EDS and cranial instability.

    "selma"

[jessica537]

Hello Rachel,

I am new here as well, diagnosed about a month ago.  Glad you came across this site.  I know when I found it I was really scared about the news of my Chiari.  Im still processing it.  But this site is very helpful.  

Jessica