What do I do?

I'm 16 years old, and I have Chiari type 1 like most of us on this site. I had my decompression surgery on October 19th, 2012. When I first had my surgery I felt like everything was better then a few weeks later all my symptoms started coming back. I still have my headaches, my hands and feet go numb more now then they ever have, the pain in my neck and shoulders has become worse. It's at the point where I want to tell my neurosurgeon that I know he can fix it, and I don't want to live off medication. The pain is so bad that I miss a ton of school. What do I do?


I am so sorry that you are having all this pain. I want to share with you what my neurosurgeon told me before my decompression.

He explain to me that since my cerebral spinal fluid had not been flowing correctly for a long time that it was going to take time for the body/brain to adjust to the new flow..He went on to tell me that I may even experience NEW symptoms..but they would go away in time.

I am so happy that he told me this..as I did get a few new symptoms...but they did go away...As for the original symptoms/pain...I was much like yourself...felt better..then worse...My personal opinion is that because the anestesia(sp?) stays in your system for weeks..plus the pain meds..I felt somewhat ok...then felt awful!

The good news for me was that as time passed...things got better...I see that you had surgery in October...that is not that long ago in reality...

I would call your surgeon and tell him exactly what you are feeling. Have you told your folks about how you are feeling?

I had my surgery in August of 08....It took many mths for me to see/feel the positive results of the surgery...It may not take you that long..I see you are only 16...I am an oldie!!!

I am glad you posted this..very important topic, as many neurosurgeons do NOT tell their patients what mine told me.

Please know that we are here to share with one another our experiences and support one another, as Chiari can be so isolating when we are not feeling well.

Have you checked out the GROUPS? I believe that there is a group called "STUDENTS WITH CHIARI"...I can only imagine how frustrating it is for you to be missing so much school...I have a 16 yr daughter...and if she is 1 minute late for school , all hell breaks loose around here!!!

PLEASE let us know what the doc says and how you are doing!

Take Care,


My surgery is4months out and I have had symptoms to return,just hang in there and don’t
be afraid to call your NS. I can feel for you,when this same thing happened to me I was devastated,thinking the surgery was’t working.This went on for a week or more but disappeared again it’s,still to soon to tell,I’ve been told it will take a year to see all the changes,hopefully this is just the brain adjusting to all the trauma,this is quiet a trip,it will take you up and down,but you’re not alone.Just keep getting on and talking to us for support,it is a a God send to have so many friends who understand.

Sorry I took so long to reply, but I've tried to contact my surgeon but he keeps giving me medicine to take. Which none of it is helping. I just wasn't sure if this was normal for me to still experience this. I see him Wednesday morning, hopefully we can settle some things! It's so hard! But thank y'all :)