Things seemed to be going along and now im waiting to see if the neuro will even see me. With only 4-5 Chiari Doctors in indiana unless i go to the mayfield clinic but for my insurance to approve that i would be looking at about 6-8 month wait and as it is now things are getting worse by the days. The meds im on make it impossible to work because i can barely leave the house to check the mail or go to dollar general due to me always feeling so sick.
Im scared to leave my house because i might have an accident atleast if im home no one will see me Im so confussed right now.
Chiari like symptoms can be caused by other neurological conditions that also may benefit from some kind of surgical intervention. I don't know how the diagnosis process goes- whether a neurologist diagnoses it and reffers you to a neurosurgeon, or the surgeon diagnoses it. My point is- don't be afraid, the doctor won't see you because of the 4-5mm. A good doctor should take a look if there isn't anythig else wrong.
6-8 months is a terribly long time! You should try anything to get to a doctor sooner. I have no idea on how you could do it. Recently a member wrote that her local Womens health community ( it was called something like that) helped to get a doctors appointment way faster. You could look into your local communities that might be helpful, or ask a family member to do that for you. That is all I can think of.
Hi Adelyna15 I am also located in Indiana, and can understand much of your frustration. Just know that you are NEVER alone! May I ask how you were able to find doctors who specialize in Chiari here in Indiana?
there are a couple that show that they treat it but not any that specialize in Chiari only. If this neurosurgeon declines to see me because he dont believe there is anything he can do from a couple of MRI's isnt going to be the doctor for me anyways. But i know the mayfield clinic in Cincinnati is supposed to be a really good place for treatment but I am not sure what to do right now its a waiting game.
I would have to agree with Fugu, that is a long time to wait. I am guessing there has to be more than 4-5 doctors in Indiana that work with the Chiari condition. I have family that live in Fulton County Indiana and that is pretty rural. I'm not sure what your area is like, as you might have to travel for appts. I have had decompression surgery. Unless you really need it, that's not something you ever want.
The symptoms can seem parasitic and draining, trust me I know. They are trying physically as well as mentally. Staying optimistic in front of my kids seems like I'm a fish constantly going against the current because of it. It is hard to be the mother I want to be instead the mother I am.
Mentally, it will also do you well to get some answers instead of waiting. Then the quality of your life can start to improve. I would start looking now. Eventually, you will find someone who will help. If it is proven that you do have it, there are organizations that can financially assist you for Chiari as well. I wish you the best!
Finally got my appointment date still almost a month away. But things are starting to move along just dealing with all the issues im having and it sucks.
