Hi. I hope this is ok as it’s not myself that has had the Chiari diagnosis but my wife (Sarah, 43 years old). From what we understand it may have been the trauma caused from her jumping on our kids trampoline that started the pains. A bad stabbing like pain in her right ear then progressed to a continuous headache behind the same ear. Then the nausea started which has led to weight loss. After 4 visits to our GP we were finally referred to the local hospital where an MRI was carried out.
We were told by a medical doctor that from the scan it was apparent that my wife has Chiari Malformation and we have now been referred yet again but dont have an appointment to see the neurologist until January 11th! Meanwhile we are trying our best to research and understand the condition which can be very daunting and complicated. I must say that this forum has been very helpful and reading other people’s stories has been very comforting.
I found it very confusing that Sarah could feel very ill some days, then better for a couple of days then bad again. I then read about the Spoon Theory which was a great way to understand what might be going on.
Understandably my wife is extremely concerned as up until now she has led a very active life but until we speak to an expert we are yet to know how serious her condition is. Hopefully exercise will still be possible even if she can’t do certain things that may cause stress on her neck and back.
To be honest this whole thing seems really surreal and to suddenly face a life changing situation is a challenge to say the least. But to look at it as a challenge is the most positive way of dealing with it for me personally.
I apologise if my facts or terminology has been incorrect in any of the above - as I said we still haven’t spoken to anyone who knows of the condition so it’s early days. Thanks for taking the time to read. Andy.
Not to worry if it’s your wife or yourself we are here to help. The Chiairi works in many ways and affects people differently. For myself I only had the occasional headaches such as having one or two every 3-4 montgs; but since March or April it has gotten every day or so. Some days are worse others are bearable. But I find that if lie down as needed it helps considerable. Also trying using ice packs as they helped me considerable in the summer months when it got worse. But with Chiairi it doesn’t mean that your wife hit her head on the trampoline it’s something that she’s born with. Wishing you the best of luck!
I had weird symptoms for years. One doctor told me the head pressure occurred because I drank Diet Coke. I went to the eye dr and was told I had pressure on my optic nerve and ordered a ct scan and nothing was found. My blood pressure kept getting high. I went through every test up to a heart cath and nothing was found. I had to have a fusion of my c5/ 6. I went back to work for about six months and couldn’t sit in my chair because of neck pain. I started observing following symptoms- eye pain,balance issues, hearing problems,stomach pain, already had sleep apnea,teeth pain and my nose did not feel normal. Finally, after 4 neurosurgeons, 2 neurologists and 3 primary care doctors they found a 1.3 cm herniation that was hindering my csf flow around my brain. I lived in the Atlanta Ga area so it wasnt like I didn’t have good Dr.s.
The Director of Neurology at Emory Hospital did my surgery in 2014. In my situation, my balance returned. Unfortunately, my neck pain is so bad I’m in bed and I’m in an assisted living home. Please understand, my prior neck surgery could have caused that. To sum it up, chiari is difficult to get a diagnosis. I would do a lot of research before surgery. There are videos on utube. Good luck!
I think it is actually great that you decided to join even though it’s not you going thru this but in a way you are because it is your wife someone you love, and can be more informed and supportive. I hope all goes well at the upcoming appointment. It definitely is a challenge but hopefully things will get better after surgery if the neurologist thinks that’s the course to take.