Is it more common than not to have pain associated with chiari? I’m very concerned because my daughter, the one who has chiari with syrint, is severely mentally disabled and unable to tell me much if anything. She was just diagnosed yesterday and I’m in an awful way emotionally because I’m concerned she’s suffering from pain but not telling me. Is it possible to have no pain?
Her chiari was discovered on a preop MRI to correct her scoliosis. Her surgery was to be done tomorrow but is on hold until the neurosurgeon figures out what he needs to do. Then both surgeries will be done at once.
Susan, I’m sure your stressed out, so sorry. Pain was my foremost symptom, however I have come across several people on this sight who state that they do not have pain or have little pain with other symptoms taking the forefront. If its any consolation, even though I was able to express my concerns about pain I have yet to try a medication that controlled it. It sounds like you are well on the road to finding a resolution for your girl, and I think it’s a good sign that the surgeon wants to wait and consider the chiari as part of the whole surgical picture too. I would be wary if they had told you that your daughter’s chiari was incidental or unlikely of consequence. just remember that there is nothing that you could have ever done to prevent this for her, k? It’s not something you can prevent or cure. Good luck and keep us posted on the latest.
Thank you so much for replying. I feel a little more relaxed knowing that not everyone has pain.
I believe my daughter would some how tell me if she was having extreme pain but mild pain might go unnoticed. As her mom, I don't want her to have any pain, of course. We are taking life day by day.
How old is your daughter? I have horrible post op pain and a major Chiari situation, but didn't have severe pain pre op. Did your daughter's Dr. have any insight on how to tell if she was in pain? I will go back and read her profile. No one can predict levels of pre or post op pain. Chiari Malformation symptoms are so varied per person it is hard to even guess. Is there a specialist that has been seeing your daughter regarding her mental disability that could maybe shed some light on ways to tell when she is hurting. As a Mother this breaks my heart. I would definitely talk to a pain specialist before her surgeries. They may also have additional insight. Please let us know any way we can be there for you. You daughter and you and your family will be in my prayers.
How long is the tonsil? Mine is 2cm and I have headaches 5 out 7 days at least. I go for my first neurosurgeon apt this Friday. I'm 25 y/o and have had headaches all my life and I finally got the diagnosis of Chiari. I think the pain depends on how long the tonsil is, the shorter the less pain, and the activity level of your daughter.