Hello! I am new here, so please forgive me if someone has already answered these questions and I just didn't read back far enough. I am 30 years old and was diagnosed with Chiari I 5-6 mm herniation after about 2 months of solid severe headaches. Immediately following the surgery, I was very confused. My husband equated our conversations to ones with his grandmother who has advanced Alzheimer's. The nurses just put it off to pain medications. The confusion continued after discharge from the hospital and then my pain increased to unbearable when vertical. I was told to go to the ER. They told me that my pain and confusion was due to my body attempting to reject the artificial graft placed during surgery. I was given a Medidose pack and nausea medications. It seemed to work. Yet I still have confusion, not nearly to the extent that it was, but I do not tell my family when I get confused and don't know if anyone except my husband knows. Also, when I bend over or down on my knees, when I get up, everything gets black and fuzzy around the edges and then recedes and everything is normal again. BTW, I still have all the Chiari symptoms (major pain when sneezing and coughing, tingling in my arms). I also still have a severe headache. I go back to the neurologist today to find out if my cerebral angiogram shows any vasculitis or anything treatable. I am desperate for answers or any advice or ideas.
Thank you to everyone for your time.

I hope things have improved!

Was your neurosurgeon able to shed some light on the continuing issues?

No, he was not. My neurologist put me back in the hospital for a week trying different iv medications. None of them worked either. Thank you for asking!

I'm sorry for what you're going through. Some of it is very familiar to me, some not. I will say it has taken 1 year since decompression surgery (for a 12 mm herniation) to finally be able to get away with coughing, laughing or bending over without getting the lovely headaches. I had decompression surgery, a month later a repeat surgery to repair a tear and a month after that I had shunt surgery(hydrocephalus). Now, just when my headaches are almost gone, my feet, legs and hands have been tingling. An MRI found a fairly large syrinx at the top of my spinal cord, something I didn't have prior to surgery.

I don't know why the headaches finally disappeared but life has been much better since they did! I've never taken medication for them since it never made much difference. I hope you get some relief! You are so young to have to deal with this. Be your best advocate and don't feel guilty about getting second and third opinions.

Good luck!

What are your headaches like and where are they?

I ask b/c I am wondering if I have a 0mm chairi. I have lots of symptoms but the one that started off was a stabbing excrutiating headache on the right side just around the base of my skull. I have it on and off for a year and a half now. I am in the process of trying to get a Dr to order a cine MRI to send to a chiari specialist to read but I am wondering if this sounds like the kind of headaches you get or not?

hi,are u still getting the headaches?? have you had your mri??? i too had the same symptoms as yourself without any of the tingling or other normal symptoms it took 5 years and alot of different meds before they picked up what i had and then it was only picked up because someone gave a second opinion!!! i was told i was fine then to my horror two weeks later the gp rang to tell me to avoid anything that cause the pain,can u imagine going to see madonna in concert without jumping up and down and shouting!!! it hurt but was worth it..please get in touch and let me know how your getting on.x