Good morning
Thank you accepting my request to join this group, and for the warm welcome. Although I am new to this group, I am not new to Chiari. I had decompression in 2003, but before my surgery, I , like many of you, went from doctor to doctor before being diagnosed. I consider myself lucky to have gotten the diagnosis at all, and was fortunate enough to have a good surgical outcome. My concern now is my daughter. She is 17 and for the past 15 months has been having extreme nausea and fatigue. She has had every GI system test, and all are negative. InDecember of 2013, she started getting pressure headaches in the base of her skull, neck aches, and tingling in her face if she sneezed, or yawned. As I have ACM, her gastroenterologist ordered an MRI. The report was negative for Chiari, but we were referred to a neurologist. The tingling has also started in her hands an legs. The neurologists ordered another MRI, which was also negative for Chiari. My daughter has had blood work, and two EEGS, one lasting 48 hours. Other than a low vitamin D level, all her tests have been normal.
I may be ober reacting, but I just dont feel comfortable accepting there is no Chiari until an expert tells me so.I have contacted both the Mayfield chiari center, and Dr. Frim in Chicago, and I will be sending her films to both.
If anyone has any experience with either of these centers, I would love to hear from you.
Thanks!
Christine
Thank you ,Abby! I have wondered if she could have EDS. She has loose joints in her knees, hips and shoulders. She has had her shoulder dislocate, and the range of motion has been measured at 195 degrees, compared to the normal 180( I think). I have brought EDS up to the neurologist we are seeing, but he brushed it off. I really wanted her to see a NS, but they would not accept her as a patient , based on the normal MRI. Although we have excellent doctors here in Atlanta pediatric,specialists are often all part of one large group , so they are the only game in town.
We will be having a phone conversation with a representative from the Mayfield Clinic this afternoon so they can get her medical history, and then see what the next steps are.
Thank you for your kind thoughts and prayers. I will keep you updated!
Christine
Abby said:
Christine,
Glad your here. I am thrilled to know you had a successful surgery. Sorry your daughter is having issues. Mayfield may want to evaluate her for ehlers danlos syndrome and dysautonomia. I am giving you sites to go to for you to check out. Many of us Chiarians have EDS a connected tissue disorder and dysautonomia. You daughter could be considered 0 herniation for chiari and have symptoms. Let us know, got you both in my prayers.
Search Results
Dysautonomia Information Network: DINET
www.dinet.org
Ehlers-Danlos syndrome Definition - Diseases and Conditions ...
Thank you, I will add him to my list!
razzle51 said:
Dr. Oakes is also close to you and is a excellent peds NS .foe Chiari …http://health.usnews.com/doctors/walter-oakes-11308
Thank you , Emmaline. I am sending her reports and MRI scans this week. I hope to get some sort of diagnosis.
Christine
I had surgery with Dr. Ringer at Mayfield and highly recommend him.