I'm really having a hard time. The first neurosurgeon that I met with said that I have a chiari malformation, retroflexed odontoid, and basilar invagination. I went for a second opinion and the second neurosurgeon gave me a polar opposite diagnosis - he said that all my symptoms are being caused by "stress."
I do have Ehlers-Danlos Syndrome, hypermobile type. The first NS understands EDS while the second NS does not - I think this had a big effect on their diagnoses. I am so confused and overwhelmed. I don't know what to do.
Has anything like this ever happened to anyone else?
I’m sorry you’re being given conflicting information…I know how frustrating that is:( Have you seen a NS that is experienced with Chiari? My pain/symptoms were not taken seriously until I saw a specialist. There are lists of patient recommended doctors…You can find links on our resources and doctors page. If possible, get a 3rd opinion with a NS that is knowledgable about Chiari. I hope this helps:)
As others have said go for three. I've talked to the Cleveland Clinic and they said my 3mm drop is nothing.
Granted that was a neruo and not a NS. I'm waiting till OCT to see a NS at the Clinic. I've also talked to NY Chiari Institution and they saw an issue. I also talked to UPMC NS and they wont give me a straight answer until I get a cineflow mri w/wo contrast however the talks I've had make me believe its an issue. I will have at least 3 opinions prior to any major decision making is done.
I'm new here and don't have much to add but I was diagnosed with the same thing as you. Chiari and Basilar Invagination / retro-flexed odontoid...also platabasia. But all 4 of my opinions said it was clear what I had by looking at my MRI's. I will add that this has caused a great deal of stress!! But stress is defiantly not the underlying reason! :) I have read that EDS and Basilar Invagination happen a lot together. The stretchy joints causes the skull base to be unstable...
I would agree with the others go for a third opinion...if that's not possible I would stay clear of the "stress doctor"... he sounds uneducated in our conditions. I wish you luck!
Get another opinion from a doctor with lots of experience with Chiari . I have been having symptoms for 12 years and it wasnt until I saw doctors who know about Chiari that I got any help. That was in June. I have been told that i need decompression, spine/skull fusion, and perhaps have tethered cord. I have decided to have just the decompression and see what happens. You are in a very scary, frustrating part of the process. Try not to worry.I was always on the verge of panic during that time, for me just last month!! Just keep putting one foot in front of the other until you get an answer that is reasonable and feels right to you. Breathe and dont give up!