Also my symptoms are light to moderate headaches that are getting worse and increasing, anxiety, sensitivity to light, pressure feeling in head and neck, floaters in eyes and rarely see spots, stiffness in joints. I also think I'm undiagnosed with EDS
Hi and welcome to the Chiari forum.
May I ask did you have a CINE MRI and a MRI of the thoracic and lumbar spine?
And are the Drs you have scheduled for the next few weeks true Chiari specialists?
Why do you feel you have EDS?
The best advice that was given to me was get copies of ALL testing...educate yourself on Chiari and ALL related conditions and research your Drs...meet a few to see which is best for you.
Do not compare your symptoms or journey with others since we are all different....we may have some similarities...but we will experience this very differently.
Know you are not alone <3
Thank you! I have my brain MRI on CD. I work as an X-ray tech and even the radiologists can't give me a definite answer on gauging the severity so far. I just will try to stay calm while waiting for the consults. Thank you so much for the advice and support!
The severity is not going to necessarily been seen on one MRI...you need a CINE MRI and more testing to rule out related conditions as all of those plus your symptoms will reveal how severe your Chiari is on you.
That Dr is wrong....we have had many that had set backs after this surgery and I would say ALL of them later found out it was EDS related....
Those with EDS tend to heal slower....and may reject foreign matter...so if the dura is opened the only patch should be one made from your own tissues.
Do use the search this community to read older posts on this topic.
I have my C,T,L spine MRI results! My syrinx goes from C2-C6/7 with 5 mm diameter. It says it takes up 50% of the cord without expanding it. Mild degenerative changes in my spine is noted (pretty sure from my un-diagnosed EDS) There is mild facet disease and mild foraminal tilting with mild foraminal stenosis bilaterally. Luckily my second neuro opinion says he's familiar with EDS (I see him this Tuesday). My first imagaing of my brain said 7.5 mm herniation and my c spine said only 4 mm...? So you guys thinking I need decompression surgery too?
So the neuro I was really excited about said he's never heard of complications with EDS and the durapatch and assured me that all of his surgeries have been without complications...what are your Dr's you have closest to MO? I know they're not close. As of right now I have surgery Oct 6th. This weekend I had the worst headache so far. I asked the nurse to do a cine MRI, but they ordered a ct head, which was normal. Then the nurse told me Chiari was not the reason for my headache and I need to see a neurologist, which she told me have a long wait list. I'm just confused.
They also had an independent genetic study going on with EDS and Chiari and WashU. They said they'll have my results in a month or two. I scored 9/9 on the beighton scale