Just thought I would throw this out there. My 16 yr old daughter is recovering VERY well from her Chiari decompression surgery that was performed on Nov. 12th 2011, had her post op check up last week and then received a letter in the mail to summarize her recovery. Her surgeon was a REMARKABLE surgeon, her incision site is already barely visible, has not had a headache in close to 6 weeks now, and doing above and beyond what has been expected of her at this point. The only issue that remains is her fatigue issues. Her surgeon never thought that before the surgery, or now after, that the fatigue ever had anything to do with her chiari or her recovery. As I speak very highly of him for his ability, I wish that we both felt as highly about him and his bedside manner. Yes, in hindsight, we are happy his skills were stronger than his ability to be warm and understanding, but when working with a Childrens hospital, my daughter never felt that connection. I am also having a hard time figuring out that someone with such ability can flat out say that fatigue is not a symptom of chiari. He felt that the headaches and pain would cause fatigue, but now that has been fixed, the fatigue must be caused by something else, and recommended a sleep study be performed if it continues.
Wonder how you feel about all of this as I see fatigue at the top of any ones symptoms list fighting or recovering from chiari?? I am confused!
Exhaustion was my top symptom. Surgery has improved it but it has not eliminated it. I still need more rest than the average person. I think it's definitely a symptom.
I also have chronic fatigue. I would go ahead with the sleep study to make sure there isn't something else going on and it probably wouldn't hurt to find an NL to follow up with. My NL thinks that my chronic fatigue is due to dysautonomia, but we are still working on the testing, so I am not 100% sure if that is the reason. I was exhausted before surgery (Dec 2011) and it really didn't get much better after. I have good days, but my good days are comparable to a healthy person's "lazy" day. It is very frustrating. Hope you can get some answers for her.
Chronic fatigue was one of my first symptoms. Hence my 1st DX of chronic fatigue syndrome. Lol It is also one of my worst symptoms that never subsides. Hoping surgery will fix it. Glad to hear your daughters recovery is going well. May be her body is telling her to rest a little longer Glad she is doing well xx
Fatigue is definately a symptom before and after. My experience is that after, my surgeon tends to invalidate any remaining symptoms as being chiari because he "fixed it" ... so it must be something else. I think that we also had an interchange about loss and trauma from chiari and fatigue can definately be a symptom of the depression stages of both of those. I would simply trust your daughter's experience at this point and try a graded increase in activity to counter the fatigue. I am 3 months out of surgery and I can go for three days of work or social interaction and then I will sleep for two days straight. I am simply trying to regain the stamina that I once had 41/2 years ago one step at a time. After 41/2 years of brutal headaches and fatigue, I do not expect that I will regain it over night. Keep up the good work. Fr. D
Glad she is doing well xx