Hi everyone!
After trying for the past 6 months to forget I had Chiari (which didn’t go very well at all) I have finally come to terms with it, and am now very curious!
Being from the UK, I have a UK based forum, but it is nowhere near as large as this one! I have two main questions;
As well as Chiari, I was born with a cystic hygroma and needed surgery when I was first born. Has anyone else had this?
I have also been diagnosed with platybasia, anyone else?
Being 20, and still a child at heart, I’m not the best at replying and my concentration levels are diabolical! But I will try my hardest to remember to reply!!
This is off topic as far as your questions goes...I went back to your profile page...when you were diagnosed with a 15mm herniation you were then referred to the Internet for research....that still blows my mind!...Have you seen a neuronsurgeon to date?
If you have seen a NS...did h/she have any recommedations?
Yes, I was diagnosed over the phone by a neurologist who had no idea what he was talking about, so he just told me to "google it"! Awful really!
I have since seen a neurosurgeon, who said he can't help me. He has now referred me to a female neurologist, as he thinks because I'm young, I would be "suited to someone more sympathetic".
I see the neurologist on Wednesday, so I'm so so so hoping it goes better than my previous experiences with the neurology department.
Thanks for your reply!!
Jessica (Katarina is my mothers name - really do need to change it to mine!)
lori said:
Hi...
This is off topic as far as your questions goes...I went back to your profile page...when you were diagnosed with a 15mm herniation you were then referred to the Internet for research....that still blows my mind!...Have you seen a neuronsurgeon to date?
If you have seen a NS...did h/she have any recommedations?
Thank you for your reply. I have looked into both and found that dysautonomia is a possibility, as I various problems, including low blood pressure etc. Will have a chat with the neurologist!
Beeba said:
Funny how we can forget about everything else yet the chiari stays right there. I so wish that was the one thing I could forget. Not sure about your other conditions but I just wanted to point out two conditions that I do know are related to allow you to research and see if anything jumps out at you. Ehlers dahnlos and dysautonomia. If anything jumps out from either of these please get them addressed first. They allow for the best outcome if addressed before hand. Best of luck and please let us know if you find anything.
I know a reasonable amount about cystic hygroma (however not if its linked to chiari) but I know pretty much nothing about platybasia, even though the neurosurgeon diagnosed me! I am really struggling to find any info on it at all. I don't really know what it is! I see the neurologist on Wednesday so will have a big chat with her then.
Have you got any info about platybasia?
Thank you!!
Mandy said:
Hi Katarina :)
It's been a tough week for the moderators, most of us have been sick or out of town, very sorry it's taken so long to get a response. I haven't seen cystic hygroma on the forums in the time I've been here (I tend to look up any terms I haven't heard before), but it appears there are a few possible causes, and half of the time an unknown cause. Platybasia could be partially to blame for your Chiari, here's the definition I have from a University here in the states: http://www.dukehealth.org/services/spine/treatments/care_guides/con...
Have you already had a fusion or stabilization for the platybasia?