Hi everybody, I am Aoife's mother and find this site has been so helpful. I was asked the other day if it is a common feature oc Chiari for all of the symptoms to be on one side of the body, as is the case for Aoife.Can anybody advise?
That’s a good question… My peripheral symptoms were one sided, and so was the Chiari headache.
Good evening Aoife's Mom, I am Michael's Mom. Michael was diagnosed with a chiari 11 years ago (he's 14), and he has had 2 decompressions and multiple other surgeries for neuro-related issues. Michael has a notable weakness on his right side, and has visible asymmetry as well. His symptoms are almost always different from one side to the other. Keep a journal of symptoms and areas of concern for your visits to the doctors. Otherwise, the details and questions get confusing or forgotten. Hope this helps.
My symptoms were all on the right side. Seems fairly common. I hope eveyone is having a nice day!
All of my symptoms are on my right side. My left side seems virtually unaffected. I guess that's what has always concerned me the most. Before I knew I had Chiari, I would have sworn I had had a stroke.
Thanks a million for your replies. What is troubling me is that on the evening that Aoife had her accident, She received an electric/static shoch that went right up her arm and she seems to have flexed her neck backwards. Within an hour she had pins and needles all down her right side and by the time she got to the hospital was paralysed all down her right side. That evening we were informed that Aoife had had a stroke. By the following mowning most of the feeling had returned, but then , the following eveining a whole set of other issues set in motion, resulting in finally getting an MRI scan done several months later showing a Chiari and sryinx. Accident happenind in May '11. MRI scan in Dec '11 after several visits to A&E,(Chronic pain). Decompression surgery in April 2012, which relieved the spasms, eased some of her neck movements but little else. Was admitted to the Rehabilitation Centre in Dublin for inpatient treatment for several, which was brilliant in one sense as it gave Aoife a social out let that has dissappeared since her accident. Gave her an idea as to what she was capable of. However, home now for a couple of weeks and we are back at square one. Terrible terribel pain on a bad day, just coping on a good day. All symptoms are on her right side. Neurologist visit on 15th November, who diadnosed a hemiplegic migraine, where I believe that it it totally down to the Chiari. Will question him on how many Chiari patients he has seen. Each time I see an door opening it closes so fast and meanwhile we watch Aoife trying to cope. All the platitudes in the worls do not help though! Apologies for the long wearisome reply!!!
I am really sorry that your daughter is having such a hard time. Have you considered that she may have Ehlers Danlos Syndrome? I was in a car accident which started my symptoms. I had the decompression which has definitely helped, but I still have symptoms. I have EDS and an a subsequent unstable c-spine that needs to be fixed. Some people with EDS do not get better after decompression because if the instability issues. Just a suggestion to look into if you haven’t already