I've been through many appointments and specialists. This was the worst every, by far. Horrid!! Last week my primary doc called to tell me radiologist found Chiari 1, so I had an appointment to go over details further today with a neurosurgeon at the same clinic (I assumed I'd take the info and go elsewhere because they don't have chiari specialists, but this was worse than I could have imagined). The radiologist diagnosed Chiari 1 (herniation 4 mm low) and a syrinx. But in his first sentence to me, like 30 seconds of meeting him, the neurosurgeon said that the radiologist doc was wrong and "he's not a very good radiologist." Confusing, heeby-jeeby alerts went off in my head. Was I supposed to have confidence in this weird a--hole? He said the low herniation wasn't Chiari because spinal fluid had some space (MRI was taken laying down, the one direction I feel okay, not sure if that matters). He said the syrinx was actually just my spinal column with a long skinny lighter color in it. Good news is it doesn't look like anything is going to implode in the next week or anything.
A couple borderline issues in my case, but either are potentially serious. So someone is supposed to at least ask about my symptoms or order a different MRI or other test. Right?? You can't have two total disagreements on something like this and not order another test, or ask another doc in the system to review the case...at least to be sure when there's a serious disagreement and keep the confidence of the patient. Shabby!!! (I'll complete the survey or talk to patient advocate at that clinic...normally happy with them and don't expect perfection but this was such a terrible experience and handled so terribly).
A copy of the MRI will be sent to me. I called a bigger clinic with a few chiari specialists to ask for another opinion. It might be a wait but they will review my case and see if I can get in for any other tests. I don't have the MRI copies yet but told the receptionist in neuroscience that I had a radiologist diagnose Chiari 1 and syrinx, and have chronic pain and weakness in my back, and that neurosurgeon I just met for five minutes disagreed....so I feel like I need someone else to take a look. She agreed and said my case will be looked at.
p.s. I would love to NOT have either issue (though I'm still stuck with mystery chronic pain and painkillers). But I can't believe this appointment was supposed to just settle things and help me feel okay. ??? I'm so frustrated!!
Ahhhhhhhhh.! The frustration is excruciating. My guess is the radiologist gets it and the NS doesn’t. Very rare, by the way, for a radiologist to call out a 4mm herniation. Don’t loose hope, add this to your war stories and keep going. You will find the right NS who validates you.
"Very rare, by the way, for a radiologist to call out a 4mm herniation."....Why is that? I know 4mm can fall within realm of normal, but over 3 can also be considered Chiari. I assume some combination of that and how the spinal fluid it around it looks, or something. And then maybe considering existence of symptoms? Maybe the radiologist is really an idiot but the overall experience at that clinic feels like a total mess. I have to start all over somewhere else. I can understand disagreement on borderline cases, but no other tests when the symptoms are bad? Just "Dr. (radiologist) isn't a very good radiologist." So, it's like I know I'm not even dealing with professionals. Just jerks?
I've had a headache for a month straight and can't stand up past about 11am without extra tramadol (pressure and spasms in upper back, why MRI was ordered to make sure a disc wasn't bulging or something...my posture and all of that is great). Wth. I hope bigger, better clinic (some neurodocs listed as chiari specialists) will at least give it another look. Maybe other tests. Just so I know. If definitely the 4mm and fuzzy potential syrinx are not issues, then I know I go to rheumatology and maybe a pain psychologist for help just dealing with it.
I just need to feel like someone took more than 5 seconds and went over my symptoms in order to help explain their medical point of view, whatever it is. The doctor said something like "In Chiari people have difficulty swallowing, so then we do surgery" (which sounded black and white), but swallowing was listed on my symptom sheet (one of the minor symptoms I've adapted to mostly) which he didn't look at, and with his immediate approach I didn't even want to go over my symptoms because he had me really believing I was in the WRONG place). I'm just stuck and going gradually down hill in spite of taking super good care of myself.
Thanks for listening. It's REALLY frustrating to be told you have a brain malformation and a cyst in your spinal column and then a week later have some other doc take about 10 seconds to just say, "No, that's wrong." I wish my insurance would have just paid for one of those docs to just punch me in the head...would have been less stressful!
Thanks Rebecca. Yes, I would be VERY happy with no syrinx! I've been researching like a bad a$s. I had a few pages of symptoms and questions, including hypermobility, everything I could think of possibly related. But it was so apparent within 1 minute that this doc believed this was a waste of time. I pushed only so far as to ask what would explain my pain symptoms (which he didn't look at or ask about) and he just blabbered on and on about chronic pain being complicated and we don't fund the research well enough (basically, "none of this is my problem, go away").
Yes, I hope a different doc, hopefully with Chiari experience, at least listens to my questions. I don't know if 4mm means the same thing on other MRIs, like standing or other angle. I also don't know how that interplays with my floppy joints. Until I know more I think I can go with what I was sensing on my own...I'm a bobble head and careful stability work is helpful, and when feelings of compression and spasms are worst, laying on my back with a little semi-deflated ball for a pillow is the only helpful position.
I'm not on a huge dose of any pain meds, but more like a daily cocktail. I walk daily, eat extremely well, am lean, take really good care of myself, have good posture and good movement (affirmed by PTs, music teachers, Pilates teachers), so I don't even understand how this would be myofascial pain unless hypermobility is worse than I think. Or nerve stuff. Muscle weakness where it doesn't make sense...could be either, or combination, and I really really need a doctor to just listen. I can keep researching but I already have a load of questions ready. Yesterday was incredibly frustrating...pretty much meltdown by the end of the day because of how terrible this whole experience has been and that crappy insulting appointment in response to 3 years of chronic pain and a borderline or questionable MRI diagnosis. Good news I hope in some ways, but so many terrible feelings in how this worked out. I'm scared to even go forward but I'll wait to hear from the other clinic. Thanks again..
Thanks Rebecca and Nykki. I did watch a lot of the csf videos, partly why I would feel a lot better knowing someone could at least listen to my questions and check out the craniocervical joint stuff. I understand there can be a complex mix of things. Add that I use my upper body a lot for my work (doesn't seem to relate to symptoms or triggering worse episodes, but if I have any nerve death in my arms I will end up on disability!!). I did send my primary doc a message too, but she's out this week. Not sure how she'll respond, though I feel like she's been a pretty good advocate.
Good nothing looks imminently serious, though the pain is bad... just want to know I don't need someone to check MRIs every once in a while to make sure it's not all going to crap in there.