New here

[hdavids]

Hi you all :)

I am new to this site and don´t know if I am at the right forum, I don´t have Chiari but I was diagnosed with Syrinx or Syringomyelia about two years ago. I live in Iceland and I have no idea where to get information's about this condition I asked my Dr but not much help there, nor have I ever heard of this before I got diagnosed.  I have been told that my syrinx goes from t6 -t9 and was caused by a car accident 12 years ago and I have also heard that it is to small ( well actually read that one on the internet :p) to be causing my symptoms, I have massive back pains, loss of sensation in my left leg and some aria on my torso, tingling all the time in my legs, dizziness, and get a headache that is out of this world. I really hope that I can get to understand this and get some information's from you or at least you can point me in the right direction :)      
Hope you understand my English
Thanks
hdav :)

[hdavids]

Hi Thieb9
Thank you for you answer
Yes the headaches are just like what you described, I too could imagine that it is because of the CSF fluid I can feel the pressure from the shoulder blades where my syrinx is located.
My Dr first said that the headaches I am experiencing are not related to my syrinx, but now he is not so shure himself. ( I am trying to find a new NS my dr. is almost 80 years old and keeps forgetting what is wrong with me lol )

Thanx again :)

[thieb9]

Hi there. I have Chiari as well as a syrinx. I was also in a car accident when I was in high school. I started showing symptoms 4 years or so after my accident and that is when I was diagnosed with Chiari. I did also have they syrinx, (which I was not informed of by my dr).. Apparently mines stayed the same for a while then between 2007 and now it started growing. So I also have the headaches you are describing, the pressure is just so bad sometimes you feel like you are going to explode from the inside out!! I would imagine that this maybe cause by the build up from the csf fluid.. I do have all the other symptoms you have and like Selma said, it is best to find someone who can check you out and monitor you to make sure its not growing.. There are a lot of people that have syrinx's larger than mine but all of the NS's I have seen were in agreement that when you have something like that growing in your spinal cord the risk of it causing permanent damage is high, no matter the size.

[hdavids]

Thank you so much for your reply :D

I have had MRI on my brain/cervical spine but that was about a year ago I am not sure what whip lash is so I don´t know if that has been checked, they did also some more tests for vertigo and MS but all that my dr does now is giving me pain medications which I hate.

I did not have an mri before the accident so no I cant be sure that the accident was the reason but my dr said it was probably that.

I think I will try to get a new mri next time I see him, hopefully next week :)

I wanted to ask you about the headaches, mine are so strange not like the regular headaches I had. It is like a pressure or something is squeezing my spine from my back and up to the back of my head. It is really scary sometimes.

Again thank you so much for your answers it is so good to know that I can actually talk to someone that knows how I feel :). I have tried to find something about this here in Iceland but it seems to be very rare condition here on this little island :s

hdav.

[n40066]

i agree with selma that you need to see if you can get your dr to do an mri of your brain/cervical spine.  with the headaches your are experiencing, my guess would be that you do indeed have a chiari malformation.  but that is just my humble opinion, and i am not a dr!!!
you can come here and be with others like yourself anytime, my friend!  all are welcome here....and we do our best to help and support each other!  looking forward to getting to know you better!
elizabeth