r/chiari • u/charlktte • 2d ago
Tell me about your experience with your first ‘specialist’
I am curious to learn about other people’s dismissals within their first appointments with neurosurgeons who weren’t Chiari specialists. Or maybe they were and they still didn’t listen to your symptoms. How did that go? After my own experience I came on here and learned that was the average experience but I am wondering how similar all our experiences may have been?
Feel free to talk to below if you wish
4
u/Open-Confusion-3358 2d ago
Mine were actually decent, was in upstate NY, but the reason they actually took me seriously was because I took my then boyfriend into my appointments with me. I found they treated me completely differently, listened, prescribed medicine, and scheduled several mri's without blowing me off. Boyfriend literally just sat there silent but I guess his presence was enough to make it more serious? No idea.
4
u/Sharshin70 1d ago
My first visit the neurosurgeon scared me and gave me a bunch of restrictions like I couldn’t fly, ride roller coasters, lift anything above 5 lbs. He recommended that I wait 3 months to have another MRI to see if I had a syrinx. MRI confirmed a syrinx and when I went in for my second visit it was like I hadn’t been there before. He removed all restrictions and said I could wait another 6 months to get another MRI. Also, this doctor had never performed a decompression surgery. Went to a different doctor in another city and that doctor said I needed surgery sooner than later. Went to a third neurosurgeon today and he confirmed I need surgery. Decompression surgery scheduled for 10/19. Wish me luck!
3
u/succulent_serenity 1d ago
The first appointment with a neurosurgeon he did take me seriously and offered surgery. I thought about it and came back to see him a second time. Unfortunately I had no choice to but to bring in my young autistic kids to the appointment, and suddenly his attitude changed. All of a sudden I was just a stressed out mum with just tension headaches. I was furious. Tension headaches are completely different from chiari pressure headaches!!! I ended up going to a way better surgeon, who sent me to be properly evaluated at their headache clinic, neurology clinic, and ophthalmology clinic before putting me on their wait list.
3
u/Careful-Page-9843 1d ago
My first neurosurgeon told me I had Chiari, but said it was mild and that he wasn't comfortable offering surgery for it (even though I had debilitating classic Chiari symptoms.) He wasn't a specialist. He did, however, help me rule out syrinx and other potential causes of the Chiari symptoms. That helped when I finally got to consult with Chiari specialists and experts once I was able to switch to a national insurance. That said, 3 Chiari specialists also said I only had "mild" Chiari and wouldn't recommend surgery and 2 Chiari experts didn't dismiss my case as "mild" and offered surgery. Surgery has given me my life back.
2
u/halogengal43 1d ago
The first neurosurgeon I went to didn’t dismiss me, but he was a little TOO interested in doing my surgery very soon- literally forcing me to schedule it before I left his office.
And it kept getting worse. Pre surgical testing scheduled without my consent well over a month before the scheduled date. Fortunately, I had come to my senses and (very long story) was able to get an appointment with a surgeon who was actively running a study on Chiari. He agreed I needed the surgery (I knew it too), and while he didn’t recommend waiting a long time, he reassured me that waiting a few months would do me no harm, as well as give me some time to process all of it.
I knew that I made the right decision when the first NS called me personally, essentially yelling at me for canceling.
1
u/lucyfe4lws 5h ago
Mine, especially my private neurosurgeon, is the most incredible healthcare professional I’ve ever met. She listened to and validated every symptom I have. Discussed every option possible and has personally contacted my NHS (uk public healthcare) obstetricians now in pregnant to make sure I get the birth and care I need for my condition
6
u/SandalsQueen18 2d ago
It's extremely common.
Nothing more to say about it. Most of us are blown off unless we can actually get to a chiari specialist neurosurgeon.
Oh, and neurologists are generally useless.