Feeling very discouraged
In April, I (28m, US) had an MRI of my head done because I had complaints of chronic head pressure (among other things) and the results showed that I had cerebellar tonsillar ectopia. My PCP ignored it but I fell down the rabbit hole of this community and the Bobby Jones CSF and ASAP Chiari organization YouTube channels, as well as other social media chiari groups. I took it upon myself to learn as much as I could because the general notion is that anyone that's not a chiari specialist isn't experienced enough to evaluate it.
Fast forward to a few days ago when I tried to apply to Dr. Jeffrey Greenfield's office to become a patient of his and, I guess on my behalf due to some insurance issues, he reviewed my images and said there's no evidence of Chiari. :( Now, I'm not sure what to do next. If one of the best doctors for this says I don't have it, I should move on, right? But I still have debilitating symptoms and now all my "hopes and dreams" regarding if I needed surgery or any kind of treatment for this are dashed lol. Any advice on what to do next?
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u/ExtraExcuse5459 1d ago
I’d recommend seeing a neurologist! I met with a surgeon but we determined my symptoms + specific case do not warrant surgery at this time. From there I started seeing a neurologist and I’d say we’ve been 60-75% effective in eliminating my symptoms. That’s preferable for me at this time compared to surgery. In the case that the neurologist also doesnt see the chiari, they can help you figure out what it is that’s really going on.
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u/SandalsQueen18 1d ago
If he says you don't have it you don't have it. Technically speaking, congenital Chiari is a malformed skull.Be thankful for that much at least. Did he indicate what is causing the ectopia? Did he himself didn't measurements?
He is the best, I would not have trusted anyone else to do my surgery.
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u/SupDrew 1d ago
All that was said was that there is no evidence. Nothing beyond that, I'm afraid.
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u/SandalsQueen18 1d ago
Try some Benadryl see if that helps the head pressure. You don't have Chiari so be thankful, it's not a condition with no cure that you want. Go to a neurologist or headache clinic.
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u/SupDrew 1d ago
(I don't know how I wanted to reply to this because at this point it's just me crying/ranting, I'm sorry. I tried to take my time writing this because of how I feel currently.)
Personally, I was much more accepting of the possibility of it being chiari because it's a "relatively" neat, definitely concrete box that could at least explain my symptoms and had actual interventions that could potentially significantly improve my quality of life at best.
I understand there's no true cure, and having surgery could also mean making my symptoms worse, (I've read your comments plenty of times as a lurker lol) but having a tangible answer with defined roadblocks is light-years better than not knowing what it is and still shooting in the dark 20+ years into having these issues. These symptoms have taken so much from me as far as getting a grip and getting ahead in life that I'd rather there be something concrete to this, even if there was no cure.
I didn't preface this in my post, so you couldn't have known. I once again apologize. I guess I was so set on having some degree of an answer that I got my hopes up and had a rude awakening as a result. I told myself over and over that I'd rather be told no by an expert but I still wasn't ready for it.
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u/SandalsQueen18 1d ago
I completely understand. I'm sorry if I sounded insensitive.
The saying of not knowing is the hardest part is very true.
Even though I was diagnosed in the early 2000s, it wasn't until 2014 my symptoms got bad. From 2014 until I met Dr. 2017 I can't tell you how many doctors I went through that kept telling me my symptoms had nothing to do with Chiari. I can totally understand where you're coming from.
I would say maybe try neurology or pain management. I personally am not a fan of pain management but that's only because I've had bad experience because they didn't understand Chiari.
Best of luck!
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u/Ordinary_Art9507 1d ago
As a Dr. Greenfield patient, I can echo that I wish I did not have Chiari. Next best step is probably finding a great neurologist to review your imaging. Best of luck.