Hello everyone and sorry it took so long to introduce myself! i am a very busy full time employee and mom to an energetic 2 year old baby girl. i guess i will tell you all about my story since i am in need of some advice. I recentley found out that i have Chiari Type 1 about 3 weeks ago. Desperate for some answers i mad an appt with a local Neorologist. He basically told me that my horrible symptoms have nothing to do with Chiar. I suffer from severe headhaches all day everyday, nausea, and basically any stainning causes my headaches to get even worse. I am looking for a new neurologist who specializes in chiari and the closest one to me is at UCLA. i am desperate for some relief. Being a mom and having this disase is absolutley horrible. i am open to any advice from anyone. i really dont know what to do. i am waiting for my doctor to refer me to UCLA but i heard that is a long process. I am scared to see another neurologist because i am afraid he will say the same thing as the last one i saw.
Let me start again as thanks to some of the clumsiness due to chiari I erased what I was telling you. SO here I go again.
First off welcome here and we are glad to have you. We are here for all types of support and we will do our best to do what we can.
Sorry to hear about your first disappointing appointment and I would have to say stop looking at NL (neurologists) and start looking for neurosurgeons (NS). There is a good list in the member services section as well as a wealth of other information. PLease do not give up if you find some NS's do not care not all are equal in their thoughts of CM (Chiari). I can relate to some of your frustration as a parent with 3 small ones here (11,5,2), I am lucky though with a good family support group. My wife and in-laws sometimes bend over backwards while others say I am faking, but all of that is another story as we are here to focus on you.
What I found out that helps a lot is keeping a daily log to submit to the doctors, try to be as detailed as possible with the information. Next I would press and demand a CINE MRI. THis MRI shows if you have blockage of CSF flow (cerebro-spinal fluid). This will help in the NS decision on how to operate.
PLease do not give up. It does seem like a long and lonesome journey but we are here for the good bad, and other.
If you need anything please ask me or any other member here. All of us here are in some state with out CM journey and there are some caretakers here as well. With the wealth of information here, again, please ask so we can help.
Thank you Michael and Mandy! I will be looking for a neurosurgeon from now on. Hopefully they can help me out.