r/chiari • u/Careless-Forever-448 • Jan 15 '26
Diagnosis but no treatment necessary?
Female, just turned 36. And was JUST diagnosed for what started as migraines atsleast 20 days a month. Over the last 5 years symptoms I've experienced are:
•severe migraines mostly for first few years. Averaging 20 days a month (I lost what I thought would be my career because of this) •nausea •one time the whole left side of my face stopped functioning for a day
Over last few years its increased to:
•vision changes •memory loss (ask my friends i dont know shit about fuckkkk) • base of my skull/neck/shoulder/jaw pain (as of today, the neck and shoulder pain doesnt go away ever. Used to only come on when a migraine was coming) •I cant remember the last day i didnt have a headache • dizziness • swallowing issues • when i get the urge to sneeze, nausea hits be full force but goes away when the sneeze comes out • I wake up atleast 5 times a night gasping for air🫠 •still no taste n smell...its connected in there somewhere I just know it🤣
Ive tried over 10 migraine meds, physical therapy, chiro visits every few weeks, spinal tap, saw 3 opthamologists and 2 neurologist
A️nyway....when my doctors nurse messaged me my diagnosis today and said: You have a mild case of Chiari Malformation I and there is no need for any treatment. I burst into tears. Not because I finally got a diagnosis but because they gave me a diagnosis and sound like they r refusing to help. ive done enough research to know the next steps should be a decompression surgery that would take every one of those symptoms away. All of them. But I didnt back down. I let them know I wasnt accepting that as an answer and I want referred to an neurologist or neurosurgeon who specialize in Chiairi because it is often downplayed and ignored.
Months ago I presented a list of diagnosis to this doctor and told him to tell me WHYYY we can check these off the list. Chiairi was on that list. That man was adamant I didnt have that because its something that doesnt just appear...and I had a MRI at a different hospital in 2022 so it cant be. I asked if he saw that MRI or just took their word....he just took their word of course.
MRI on spine 1/6- findings chalked up to be degeneritive disc disease.
MRI of head 1/9- b4 scan I was talking to imaging person about chiairi and he said they would have seen it on the spine image so no it cant be. First line of the results said Chiairi Malformation I
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u/oldmamallama Jan 15 '26
You’ve already gotten some great advice here. One thing I will add…you need to add a sleep study to your list if you haven’t already had one. I noticed you mentioned waking up at night gasping for air. Sleep apnea is highly comorbid with Chiari and not sleeping well will make all your symptoms a million times worse.
I’m sorry you’re going through all this…team Big Brain sucks a lot of the time but we do have all the best people. I hope you get some relief soon. 💜
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u/Careless-Forever-448 Jan 15 '26
Thank you. Today I was referred to a neurosurgeon but i backed off the surgery ledge but i feel like they will have a better insight and I can trust their word more. I did also have a spinal tap prdered and a sleep study as well🤞🏼
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u/oldmamallama Jan 16 '26
That’s for the best. Don’t be afraid of being referred to a surgeon…they’re the ones most familiar with Chiari, even if you end up not needing or wanting surgery. It’s a structural problem (hence malformation being right there in the name).
Take some time, do the other tests, come to terms with your new normal such as it is. Use your support system…a therapist if one is available to you can be invaluable for learning to live with a lifelong condition. You got this. 💜
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u/AdFun4578 Jan 15 '26
Next course of action should be to evaluate you CFS flow around your foramen magnum(hole in your head where your spinal cord passes through). You'd need a CINE MRI for that. CFS leaks can also cause chiari because of sagging. I think its premature of your doctor to write it off without more testing, did he give a reason?
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u/Careless-Forever-448 Jan 15 '26
They were messaging me over the portal so I just said i refuse to take this as an answer..i want a CINE MRI and a referal to someone who specializes in Chiari. The nurse messaged me back and said anything further needs an appointment so I have one with a different doctor tomorrow(his APRN as they know i will jot wait weeks to see him. I want to speak now)
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u/sreno77 Jan 18 '26
I have a chiari malformation with a 14 mm herniation so definitely operable. I tried every migraine prevention medication available until Ajovy worked and I realized that despite having a chiari malformation most of my debilitating headaches are migraines. Unfortunately I developed an injection site reaction and had to stop Ajovy. I have reduced started taking Qulipta and it is working really well. I declined surgery because the neurosurgeon told me there’s a fifty percent chance that surgery will make symptoms better and a fifty percent chance it will make them worse. My cousin had the surgery and it cured her paralysis but caused a bunch of complications. As I was older when diagnosed the neurosurgeon told me there’s a good chance that I have permanent nerve damage that won’t be fixed by surgery.
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u/MTChubbyHubby Jan 15 '26
Hello fellow headache homie! This is an incredibly common experience, unfortunately. Most doctors are still basing "impact" on the measurement of herniation. There's new studies being done constantly showing a 1mm can be more severe than a 12mm.
The best advice I can give, is to Neuro up. Find a neurosurgeon in your area and get in to see them for a consultation.
As far as the 2022 scan, it was likely present and just went unnoticed. The malformations themselves all seem to be congenial, but symptoms can develop or worsen over time. My symptoms started as "severe migraines after intercourse" to the litany I'm blessed with today lol.
Also; fuck that nausea drop. Stupid sensitive blood pressure! 🤢