newly diagnosed

[maggiemay24]

i have just been diagnosed with chiari malformation type 1 and a spinal syrinx i am waiting for my operation but would like to know if any other members suffer with strange body temperatures my hands arms legs and lower body could be cold but my upper body is clammy and hot i can cope with pain numbness lack of strength but this has got me beat

[AlishaNiven]

Having just had the decompression I thought it may be a good idea to share my learning;

Make sure you understand what happens after the op not just during. Will you be in ICU or not etc what Is the recovery like etc
Communicate upfront if you have any sensitivity to medicine - my pain management was intense and the drugs did not agree with me
Also understand whats normal post op when you go home so you what to look out for as red flags

And take some straws with you! They saved my life and helped me get extra fluids in!

Good luck for the procedure - try not to get to hung up on the looming date!

All the best and God Bless
A

[selmaS]

   Hi  and  welcome  to  the  Chiari  forum.

  Temp  issues is quite common with  a  syrinx and  Chiari so  you  are not alone,,....

I had many times  where  I was  freezing cold  but sweating like  I  was in  a sweat  box.....it is very strange to  deal  with.....I still tend  to get warm/hot  when  my bladder is  full  in stead of  feeling the fullness....I  have a neurogenic bladder....

  Make sure  they  do  testing for ALL  related  conditions....and  that you  have  a true  Chiari  specialist....