My daughter saw a neurologist on Monday and he wanted to send her to several different specialists to track down causes for each individual symptom rather than to pursue the potential for Chiari. He even indicated that if she had Chiari it may not be what's causing her pain, dizzyness, etc. Her older sister and I both have Chiari and had the decompression surgery, so it's logical to think this could be a problem for her. My older daughter went through a horrible time dealing with neurologists and ER doctors who treated her like she was crazy. I don't want my younger daughter to go through the same thing, but we no longer have a chiari specialist here in town anymore.
My question is: Why do so many neurologists resist Chiari diagnosis? It almost seems like they've been programmed to discount anyone who thinks that's what's causing their problems.
Most Dr's aren't educated in Chiari Malformations. It's easier for them to send you to other specialists than to admit they can't diagnosis or treat CM's. I read where you and your older daughter went thru a lot & agree I wouldn't want your younger daughter to be put through so much like we have. Is there any Chiari specialists in your area? Maybe we could help you find one.
Please let me know if you need help finding a specialist. We have members from all over the world,
I know what you mean. That was the most frustrating part about this besides the pain, oh and people calling us crazy.
I was thinking about this because I know i had the answer somewhere in my brain haha.
I don't know why they don't say this to us, but the truth is that most doctors cannot "confidently diagnose" something that they are not educated about or do not have enough evidence to diagnose.
My PCP originally sent me home with Claritin-D after getting my MRI results. But now, after speaking directly with my NS and psychiatrist and reading their reports and other test results, he's totally on board with me getting brain surgery!? I think it's simply an awareness issue among doctors and that can be frustrating for the doctors and patients, but they have go on with their day... they have a lot of patients... and CM is a complicated beast.
I think doctors are used to having the answers and with Chiari they don't.So instead of muddling through and risking looking dumb it's easier to dismiss us. I have had alot of experiences over the last 16 years of people saying awful things to me. Then I started seeing an amazing wise physical therapist and she said "When they couldn't make your pain go away they just wanted you to go away and they would say or do anything to make that happen" It was a lightbulb moment for me. However I never understood why my nuerologist that I saw for 10 years didn't want to atleast learn about Chiari. She didn't believe my symptoms came from Chiari until she saw them duplicated in 2 more patients. It should be criminal to put kids through what we have to go through. It's unfortunate that you and your daughter(s) have it but atleast you know exactly what they go through. Good luck to you and your kids. I am saying prayers for you. Bless You....Wendy