Hi sweetie,
Been going through the same thing with docs here myself, all I can say is keep trying. Don't let them make you feel like you are crazy. Don't let them tell you that just because most Chiari patients are asymptomatic you must be too. You know your body and what is or isn't normal for you to be feeling. I almost gave up, but then I realized that if I don't kick scream and do whatever else I have to do to get them to listen to me then they are just as happy to hand me another incorrect diagnosis and shuffle me off to someone else. So do what you have to to get their attention and keep it. If they still don't listen, find another dr who will. Remember, you are the one that is paying them, not the other way around
Stormy
I got a year of pill-pushing doctors trying to give me Xanax or antidepressant medication because clearly my symptoms were psychosomatic in origin. Finally, presumably to get me to go away, my orthopedic doctor prescribed a lumbar MRI.
Syrinx.
I completely understand how you are feeling. My symptoms started right after 911 and the Doctors at UVa first thought it was due to stress. However when I lost the ability to walk and the pain of my headache became unbearable they ran tests and discovered I had Chiari Malformation. After 3 months of rehab, (physcial, speech and ocupational) I learned how to relax (stress doesnt help) and most important I took what I learned in rehab and now use it daily. The last three years have been not so good for me. My headaches come more often and I lose strength in my arms and blalnce is off sometimes but I always refer back to my rehab exercises and the things I learned there. The most important thing I can tell you is not to stress about this condition. I raised three young daughters through this by myself. Make sure you have a doctor who will listen to you. That is the most important thing.
Hi and welcome to the chiari forum.
Please be prepared for the possibility that the NS may dismiss u also.It happens all the time with chiari.There are not enuff well informed drs in the area of chiari and related conditions.
You will want to have MRI's of ur complete spine and rule out the possibility of syringomyelia (syrinx) or tethered cord.U also want to be sure that u do not have a CSF blockage...it is more important than the size at this point.
Please read the poem by Dr Oro at the top of the forum-it will give u hope that u can find a dr that understands.
As to relief without surgery- the decompression in particular, that is something a chiari specialist can help u with...they do not always opt for the surgery.There are meds that they may rx.
Try and relax and know u r not alone...we all have felt like u do at one time or another.
"selma"