hi

[keratza]

Hi everyone. I just have been diagnosed with Chiari and I am scared to death. I feel like my life finished. I am afraid that I can die every moment and I dont laugh or sneeze because I read that it is dangerous. My family tell me that everything is going to be ok but I know that s not true. I would like to ask - is the surgery inevitable? May I live with this like before? I wanna be a mother one day - is it possible? The problem is that in my country there is no specialists (or it s my impression). How to live with this ilness which is like a death sentence?

[Blessedmomandwife]

The best thing you can do is just what you are doing now. Read about it, read other people's experiences. Know that you are not alone. That was very helpful for me. Even with the diagnosis and I've had the surgery, I have symptoms that are very bothersome (but the surgery did help some symptoms) and some doctors don't see the relation to Chiari so it can be very frustrating. Knowing others experience similar issues helps me to feel ok about my situation and not question myself.

As far as a specialist goes, I would make sure you find a surgeon that you are comfortable with. Make sure they really listen to you and take time to explain things. If you don't feel comfortable after meeting with one, keep looking. Brain surgery is a big deal and you need to be confident that your surgeon cares about your situation.

And if it helps to know, my surgery was fairly easy. The incision was pretty small and recovery pretty quick. I was in Neuro ICU as a precautionary, but out of the hospital in just a couple of days. Honestly I would rather experience that for a few weeks than experience the horrible pain and symptoms I have for so many years.

[padrssuck]

Welcome and know i are not alone in feeling like this. I felt the exact same way when i was diagnosed. Im 28 and was (i still am) terrified that my life was over and i was going to disabled the rest of my life. The more research i did, the more horrified i got. Hang in there, try to take it one day at a time

[keratza]

Thanks a lot for your reply. I live in Bulgaria, it is in East Europe. No I didn t have CINE MRI but I will ask my neurologist tomorrow. I am so scared, you cant imagine so thanks for your support (Sorry for my poor English :)))

[selmaS]

  Hi and welcome to the Chiari forum.

  Laughing and sneezing may cause u discomfort, but it is not dangerous for most with chiari, it all depends on how ur Chiari is affecting u and if u have an obstruction...but just a sneeze or laugh is not going to cause ur death IMHO....I laughed and sneezed and had surgery and I am still here.

No one can answer if u will ever need surgery...as it is not a cure or a fix....it is a means to restore CSF flow and slow progression....do u have a CSF obstruction? Did they do a CINE MRI on u?

I know u said the Drs in ur country do not know chiari...where are u?

Keep in mind this is not an illness, but a condition...we all may have to learn to live differently....but it can be done : )