I have my NS appt on Friday and they want to schedule surgery asap. They found that the Chiari is a problem and I also have a syrinx. So, who's going to induct me into the "zipperhead" club. I'm sorry. I have so many emotions going on right now that I don't know how to act. One minute happy then sad then mad etc. It's a lot to take in. I am grateful that I have an official dx though!!! Usually I have a lot to say, but I think I am still processing the fact that I am actually having brain surgery.


I completely understand. Now that my surgery is two weeks away I’m having a lot of different emotions. I’m glad I’ve got answers. I’m hopeful that thus will stop progression and my symptoms get a little better. Just still nervous because it’s my head and neck.

Let me know when your surgery is. We can compare notes. I wish you all the best.

Hi Nicole......

I will welcome you to the ZIPPERHEAD CLUB!!!!!!! I personally like...."TOO MUCH BRAIN TO CONTAIN!!!"

Seriously though, I think your emotions are completely understandable.....Is your appt. this coming Friday?????

I am thrilled you have a proper you can move forward to treatment and feeling better. Keep us updated.



PS: Oh my goodness, weeks til it is done....Keep us updated on how you are....Thinking and praying for you both.

Hello! Though not a zipperhead (or Chiarian) myself, I think the emotions you are feeling are similar to what everyone who has a diagnosis of a chronic illness goes through. I know when I first learned my diagnosis (CRPS) I went through pretty much the five stages of grieving (typically used for death in psychology, but really applicable for any sort of loss). The stages are denial, anger, bargaining, depression, and finally acceptance. Aside from acceptance being the final step, the rest don't come in any particular order and you may find yourself jumping from one to another to another. You may (like me) have relapses from acceptance back into one of the other four stages. I guess all of that to say that what you are feeling is NORMAL (whatever normal is). The best thing I can recommend is for you to get it out - journal, do art, talk, whatever makes you feel most comfortable!

Hugs to you as you start this long, scary journey!

Thanks Katie! I hadn't even thought about the stages of grieving. That actually makes more sense and makes me feel more normal.

Lori, Thank you for the welcome. I do really like the "too much brain to contain." That was the first that I have heard that :)

Mindy!!!! Good Luck!!! I bet you are going through a boat load of emotions right now! If you need to vent, please do. My pre op appt is on the 16th. I do need to get a 2nd opinion though. Even though I am sure this is it! I have known the whole time. If that makes sense.

I really can not express too much, how wonderful you guys are! It has been a huge help to log on here and find friendship, understanding and reassurance. It has made a world of difference.