Chiari 1, approx.. 5mm (but I have a huge skull and it doesn't look completely squished in there). 1.5mm syrinx, 10mm cystic lesion at T5 (I think those last things are the same, measured on different planes, since I was only shown cerebellum and one possible syrinx when viewing MRI). Neurodoc, who talked at me for 5 minutes, doesn't agree. So it's fair that I don't have any confidence in this MRI procedure, right? I don't know who I'm supposed to believe. I can't automatically believe the NS because he didn't even glance at the info I had to fill out or ask about symptoms. He was sure it was a wrong MRI.
T5 is roughly where the focal point of my pain and spasms are. Would that match up or would you more likely be feeling tingling in your arms or something? (I've had more like burning sensations, like hot water, but no pain in arms unless I trap a nerve in my neck). If anything, it is a very thin lesion and could really be my spinal cord. I want to believe that but don't know how to feel about these mixed messages, especially when the radiologist's would account for my headaches and upper back pain.
Now I feel like I'm screwed. Insurance changed yesterday. Will a new insurance company want to fix this mess? I assume I deserve another look and hope my primary doctor will write a referral to another clinic. Are you guys finding specialists with your own money or are the specialists able to file the insurance for you? Not sure if that makes sense the way I'm asking, and probably depends a lot on the insurance company (just not sure I want to call them to ask about this since it's a repeat of a procedure that was not done in very good confidence). My primary doc is out but I've sent her a message. I'm worried about the insurance part and frustrated because I'm not the one that screwed this up...I'm just the one left to live in my body.
chi, you have a herniation there’s no argument with that. The NS you saw doesn’t believe it’s causing your symptoms, so you need to move on to another NS. I, personally, would give the radiologist the clout here and chalk the NS visit up to a dud. You need to see a NS who truly specializes in Chiari, who will validate your MRI and stmptoms. Symptoms and neurological involvement are the most important things to consider since many people have a herniation without symptoms. I would assume you have the syrinx. Keep moving forward…
I was sent to a quack of a dr. who im not really sure was a dr. But a headache specialist she did an mri and said i was fine and kept writing scripts for antidepressants for the headaches. I told pcp she wasnt helpful and got referral to neurosurgeon who used the same mri and said i had chiari and a few other things wrong with me. New insurance should be okay as long as you get the refferals they shou,d pay. Alot of doctors dont know anything about chiari. Thats why it is so hard to get a diagnoses. I spent 15 years of ppl thinking im a hypochondriac cause they cant SEE it. I guess you coukd say, yeah its in my head (inside) lol.there are still the nonbelievers who after 3 surgeries still think nothingis wrong with me. Unless they stay at my house for a few days then they know.
Thanks jcdemar and Allura. The NS was so arrogant and instantly sure of himself that I felt like he thought I'd believe him based on his confidence alone. Nope, I don't. If I'm left to guess which interpretation is correct, the radiologist's would fit more with my symptoms (which NS didn't even ask about).
Yes, it's terrible having people think you're just a wimp or hypochondriac. And even when you know what's wrong, I think people just don't believe because they can't comprehend. I'm pretty careful about who I share any of my pain stuff with because I don't want them to just think I'm a loser, you know? I've given up some important things I enjoyed doing because of the pain, and I am already scrambling to maintain any sense of joy and meaning. Being taken seriously by medical professionals feels important at this point. I'd love to find out it's all just myofascial pain, but then the treatment (which I've tried) is very different. I just don't want to continue years on some possibly wrong path.
Even if my skull is big enough to nicely manage my dipping cerebellum I want some certainty on the possible lesion. I was hit by a car (6 or 7 years ago maybe) and my upper body swung 180 really fast. I called the clinic for weeks after that because of upper back pain. They were useless. If they were worried about claims I should have said, "Don't worry, it was a hit-and-run!" Well, I switched clinics. Now I like my primary doc and really hope she can help advocate a bit after these conflicting results. They really left me in an impossible situation and I'm angry if they think that's okay.
Alrighty, I am too verbal. But thanks for letting me share here. I feel like I'm in over my head!
When you go see your primary care doc i suggest you go to the mayo clinic site on chiari malformation. Print it out. It has a definition and It has a whole list of symptoms.I took and highlighted the symptoms i have and took it to my doc. Cause she was honest about it ( alot of doctors arent ) and said i really dont know what it is so i will send you to someone who does. You can have severe chiari and no symptoms, or mild chiari and alot of pain and symptoms.chiari is weird like that. :)
Chi EE said:
Thanks jcdemar and Allura. The NS was so arrogant and instantly sure of himself that I felt like he thought I'd believe him based on his confidence alone. Nope, I don't. If I'm left to guess which interpretation is correct, the radiologist's would fit more with my symptoms (which NS didn't even ask about).
Yes, it's terrible having people think you're just a wimp or hypochondriac. And even when you know what's wrong, I think people just don't believe because they can't comprehend. I'm pretty careful about who I share any of my pain stuff with because I don't want them to just think I'm a loser, you know? I've given up some important things I enjoyed doing because of the pain, and I am already scrambling to maintain any sense of joy and meaning. Being taken seriously by medical professionals feels important at this point. I'd love to find out it's all just myofascial pain, but then the treatment (which I've tried) is very different. I just don't want to continue years on some possibly wrong path.
Even if my skull is big enough to nicely manage my dipping cerebellum I want some certainty on the possible lesion. I was hit by a car (6 or 7 years ago maybe) and my upper body swung 180 really fast. I called the clinic for weeks after that because of upper back pain. They were useless. If they were worried about claims I should have said, "Don't worry, it was a hit-and-run!" Well, I switched clinics. Now I like my primary doc and really hope she can help advocate a bit after these conflicting results. They really left me in an impossible situation and I'm angry if they think that's okay.
Alrighty, I am too verbal. But thanks for letting me share here. I feel like I'm in over my head!
Thanks...I'm hoping my primary doc can advocate for me, or it feels like I'm screwed (esp. with insurance change happening at the same time).
Now when I look at report it looks like 3 separate (wrong?) things. Can a radiologist really be that bad??! Chiari 1, syrinx related to that, and a lesion separate and likely related to some other congenital cyst. I looked up that form of duplicate cyst and it can lead to pneumothorax. I was a nearly full-term baby with breathing problems and my lungs did collapse a few years later. It's maddening when I feel like the radiologist report could make some good sense and he knew nothing about me. Neurodoc seemed content to write me off as mystery chronic pain case. I had no idea a clinic could accept this sort of discrepancy with no care to do another test (though that's where I'm hoping my primary doc can at least care).
Thanks Rebecca...probably I keep questioning because NS (who gave a strong a-hole vibe) said he wasn't very good...basically no way to feel confident about either. My guess is my primary doc will help sort this out, hopefully with a referral elsewhere. We'll see. I don't know that I have EDS, though I do know that I have joint hypermobility and instability in some places, so would love someone to check out my head/neck. I don't know much about this other cystic lesion but in the little I can find out it does co-occur with Chiari II (less on Chiari I but basically the radiologist noted a few congenital issues...without knowing I was also a 4 lb full-term baby that wasn't breathing...hmm?). Neurenteric cyst (a form of foregut duplication) is also associated with tethered cord. Also presents as stabbing local pain with radiating features, most commonly found in thoracic spine (which isn't prone to a load of pain features aside from more bizarre underlying abnormalities because it is the most stable part of the spine). My gut is telling me to get a better doc, which is why this has just been so frustrating and also insulting...and now knowing I'm a little at the mercy of my primary doc in order to get a better look without going bankrupt. If there IS a duplication cyst it has to be removed (not my problem if it's too weird for them to know what to do about it...just get honest and refer me to somebody who does...don't let arrogance destroy nerves!)
I ordered a book on Chiari which I will read through. Whether I have it or not my cerebellum isn't somehow shrinking. And I just don't know...trying to understand not from perspective that I positively do have it, but from perspective of getting better at asking the right questions. I've never felt this level of difficulty/complexity needed in advocating for myself. Willing to do it, just very new territory for me.
Nykki, the book is "Conquer Chiari: A Patient's Guide to the Chiari Malformation". Looked like pretty much the only such guide on Amazon. Have just skimmed parts but looks pretty helpful.
Beeba, the "syrinx" was very thin and faint, so NS said it was just my residual central canal. It didn't look like "SYRINX!" but with the other stuff of course I want someone to take it more seriously and at least give it another look. I really wonder if the duplicate cyst made him just want to brush me off his schedule as fast as possible, like 3 minutes.
I was a really stressed out baby and they thought close to term, so was induced. I was freaking out in there. Insurance determined I wasn't premature so there must have been some math involved. But I was 4 pounds and not able to breathe...incubated for at least a month. Lungs collapsed a few years later and I landed in PICU (you'd think if there was a cyst they would have seen on x-ray, but there was so much other junk from the pneumothorax...and if there is a cyst it's hiding behind my esophagus). Chiari II highly doubtful (the suprising part if the radiologist is correct is that my spine/vertebrae is actually in pretty good shape). Have a small sternum deformity that doesn't seem to cause problems (but also add that to my Marfanoid characteristics). Lots of autonomic dysfunction in recent years and the pain. Compression/pressure feeling has gotten worse and that's right around T5.
Yes, a couple family members have informed me that any major diagnosis can sometimes take time. I wasn't prepared in my head for mixed interpretations without some clear follow-up. I've struggled to take myself seriously and advocate for myself in any sense...have gotten better, but this is a lot of stress...helps to remind myself that asking for referrals is totally sane, and so is expecting some kind of follow-up on a lesion. Since I found that out AFTER my appointment with NS it's extra insulting that he rambled on about chronic pain usually not having and obvious source, while he knew my MRI indicated a spinal cyst right in the pain area indicated by my primary doc. Now I really suspect he didn't know what to do with it, so chose to insult the radiologist and me. King of the Arrogant A-Holes.
I agree 100% with Beeba- somthin ain’t right! You go with your instincts and know everyone of us has been given incorrect info about our condition at some point- by a medical professional. I don’t believe, to date, I’ve heard of a person being over diagnosed- it’s usually the opposit. We have been trained not to question our doctor and yes it is stressful, but in an ocean of undereducation about Chiari we can easily pool together and see our commonalities with this diagnosis.
Thank you! I hope my primary doctor has a referral or, at least orders for different test(s) in the next couple days. If not, I might have a meltdown. Even if radiologist wants to note things, even if unsure, just to cover his butt and make sure someone takes another look, it's odd he was so specific (especially the duplication cyst...which would be super rare but they would need to get that thing out!). If I have any news or questions I'll probably start another thread.
Thanks everyone! Not even knowing 100% I have Chiari (syrinx or other cyst), this support is much more helpful than what I've gotten from friends of family. Having to tell anyone a neurosurgeon and radiologist don't agree somehow kind of makes me the crazy one...or like my problems aren't bad enough to be obvious to 2 doctors, so stop freaking out..
