Okay so I kind of need some advice. I have Chiari type 1.
I had decompression surgery about 11 years ago when I was 13. Things were too bad not to. It went well and no shunt was needed. Things got better, no more headaches or dizziness. But fast forward to now, I have realized that I don't know what normal head pain is.
I have headaches every day no matter what. Just feels like immense pressure.
I do have dizzy spells again.
But I had a recent MRI done that didn't show anything abnormal. But it was done at a normal clinic and wasn't focusing on my Chiari.
So basically what I am asking is, has any one had symptoms come back after surgery?
I was so young when I was diagnosed with it that I wasn't told if this was a condition I would have to learn coping skills or not. ect.
Guess at 13 I thought have the surgery and things will be completely fixed.
Any insight? Chiari websites don't describe life after surgery.
I had surgery a little over 3 years ago, and I started having recurring symptoms in the past year. We (my doctor, NS and myself) are not completely sure if it’s Chiari again but we are investigating. When I had my surgery my Mom thought that surgery was a cure and I’d be set for life. It wasn’t until I explained the entire picture that she realized I would be dealing with this the rest of my life. I’m 27 years old and I’m back living with my Mom and my step-dad because I’m not well and back on disability with an ‘unknown’ illness.
So far my coping skills for this recurrence are non existent. If I’m told it definitely is Chiari or its definitely Stenosis or whatever I will cope better. I do not cope well with the unknown illness.
I also don’t know what a ‘normal’ headache is… I know people who have chronic migraines… and I would like to have that over this.
My suggestion is see if you can find a life coach or therapist to help you with coping methods… I’m currently on a waiting list for a life coach. I’m hoping they can help me deal with a bunch of stuff.
I hope some of this is helpful to you… I do find that posting on the site, even if no one reads it helps me… this is a group full of people fighting the Chiari fight in different manners and different difficulty levels, and we all can understand how draining this fight is… it gives me comfort knowing I’m not alone and hope that we will find a cure.
Thank you guys so much. Your input means a lot to me. You are right, I was given no insight as to when to go back in. The doctors basically said I was fixed. Heck! I hardly knew there were this many other people that dealt with some of the same things I do. So your advice means a lot.
I will go in. I am just so frightened to go back. It is never good news.
We are here for you. Let us know what happens when you go back and regardless of good or bad news, we will always be here for you.
Check this discussion, there are similarities with yours. I’m sorry you are having the headache, can feel so defeating. The girls are right though, we have options now and treatments are getting better, at least some of the NSs are getting better :).
Hang in there,
Is your original NS still in practice? If so I would see if it's possible to have your MRI evaluated by the NS. He might have a better idea of what to look for than the average doctor or the radiologist that read the MRI.