My doctor had another radiologist look at my MRI and he affirmed the same malformations as the first (an a$*-hole neurosurgeon told me the first radiologist was wrong and "not a very good radiologist"...horrible anti-professionalism and handling of my case, especially under these circumstances). So, Chiari 1 and also a duplication cyst. I didn't get clarification on possible syrinx, but if it's there it's very very skinny and faint. BUT I am going to ask all of the questions I had prepared over a week ago and ask how this will all be monitored.
My doctor said I don't need surgery so is referring me to neurology for a better checkup and looking at how this all might fit with my symptoms. She and radiologist think this stuff wouldn't account for my level of upper back pain. Whatever. At this point I'm just glad to not be written off. It's true there is room for my spinal fluid. Herniation approx. 5mm but it doesn't look squished in there. But I will ask about possibly hypermobility and how often I can get an MRI to see if things change at all. I don't have headaches often, but they are hell when they come. I am only dizzy when over-tired and have mild autonomic symptoms, but also only when exhausted. It helps to learn more about Chiari and affirm what I have been sensing about my body. As for the cyst, I need some extra assurance that this shouldn't be removed (based on the little I can find, these should be taken out, even if asymptomatic, because of risk for later malignancy).
I'm also waiting for the CD of my images so I can send all of my info to a better neurosurgery department for review. I would believe I don't need surgery and that it could do more harm than good in my case. But I want to know that the right specialists have a plan for monitoring the Chiari and the cyst. Duplication cysts are common in Chiari II, so it makes sense now. Also makes sense of lots of things. I was not a healthy baby...4 pounds full term respiratory failure and later lung collapse.
Thanks for some support here. I wasn't at all prepared for the weirdness of the MRI (was just hoping I hadn't slipped a disc) and certainly not for the totally horrible meeting with the neurosurgeon last week. It's been very hard to know how to handle all of it because of all of the uncertainties and nobody understanding anyway.
I'm glad your regular doctor is taking your seriously. Definitely follow through on getting your discs evaluated by a neurosurgeon competent in handling Chiari cases!
Thanks Anglyn. You mean evaluate discs for hypermobility? Most discs look good. I don't love how my cervical spine looks but apparently that's okay.
I'm going to upload a mini pic, one of about 100 that make almost no sense to me (think I picked one of the better views of cerebellum here). But it doesn't look like a horrid Chiari. But that's just based on my totally unscientific comparison to whatever I've come across online lately.
Question for anyone though: if surgery is the only treatment, and especially if you are not dealing with Chiari specialists, is it common for them to say this shouldn't be causing pain? As if for them to agree there might be a pain connection might mean they have to deal with treatment? (I'd be fine with NOT doing surgery if I don't need it, but would like monitoring).
I'm figuring out how to save the info so I can send to a different clinic which has a few Chiari specialists. For now I just feel better that the messages are horribly mixed and my primary doctor seems to be on my side, even if it's not completely Chiari-informed or helpful. I have a 1.5mm syrinx. That's little...I know some people would love to shrink a syrinx to that size. I just want to know that it won't expand. I also want to know if it's connected to my pain. I'm meeting with a neurologist and will bring questions, but also preparing myself for that to not be a totally helpful appointment either since she's no Chiari specialist. It's just a start at my current clinic while I hope to get my info and coverage to go somewhere else. If nothing else maybe she can recommend different meds for neuropathic pain. I don't know....I'm really in the Twilight Zone here...
Thanks Mandy. I'm feeling scattered on how to access a better specialist within the right channels for my insurance but I need to figure it out. I don't expect neurologist to know much. I am at the end of my rope with PCP referral because she will not refer me out of her clinic and the best option seems to be neurologist. I will ask about all the hypermobility and other questions I have...still hoping they will do more tests there but I really have to get in somewhere else for peace of mind.
This neck thing is a little more pronounced on another image, but this seems closest to where they saw herniation. The neck thing was called "normal kyphosis" because in itself I suppose it's not a big problem. But it didn't take me much looking around to find that cervical kyphosis (the wrong curve in this case) is a sign of instability, sometimes connected with Chiari and/or EDS. I am really nervous about finding someone who can find meaningful connection and monitoring. Or how to I stabilize my head better without surgery? I'm otherwise healthy and pretty young...pretty sure my neck shouldn't look like this.
better pic of my backwards neck...so annoyed they didn't even make a note of that. Instability, hmm,????