Chiari Online Support Group

Son has been getting worse


#1

My son was diagnosis in 2012. In the past few months he has been have bad headaches on top of his head and the back, dizziness, chest pains, says he feels like he is always standing g on side of mountain, when he eats he feels as if his throat is closing around the food. We go see his neurosurgeon this Friday..because of his chiari being so large I believe. They will be wanting to do surgery. In reading about this surgery and the post surgery I am worried about my son.. he has cystic divided and cough a good portion of the day and has digestive issues that I read that suppressing his cough which can be dangerous for him. I have barely worked in the last few weeks cause of him having so many issues lately..I have had him in er so many times The past few weeks!! Generally I take these one day at a time one issue at a time but some of his symptoms have got me so worried. He barely can sleep because of pain, body twitches and coughing.


#2

Hi Brenda,
I just had my fossa decompression on 4-13-15. My Chiari was 16mm and extended down to C-2. I can defiantly tell you coughing is a huge concern for two reasons, 1 it can compromise the patch he will need to make extra room causing it to leak, 2 it is painful to sneeze or cough still, I’m 30 days post. With that being said I think that you should discuss your concerns with the neurosurgeon About the coughing. I can tell you for myself I am glad I had the surgery, I am still recovering and am not at 100% yet but the pain I was having prior to my surgery was horrible The pressure/pain in my neck was unbareable.I feel better everyday and I’m starting to feel like my old self one day at a time. I hope everything worksout for your son I know what he’s going through and my heart goes out to him. Tell him to hang in there!