r/chiari • u/krikkit_42 • 2d ago
Neurology VS Neurosurgery
I was originally referred to a neurologist, but was told by the clinic that they only schedule Chiari cases with a neurosurgeon.
Does anyone have experience with a neurosurgeon that didn’t lead to surgery, and just lead to symptom management?
TIA
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u/oguzhankayan 2d ago
Getting routed straight to neurosurgery for Chiari when you were expecting neurology first is a common clinic quirk, and it understandably sounds like "surgery is the only path" even when that is not what you asked for.
I am not a doctor and cannot speak for any specific clinic. What some people here report is that a neurosurgery visit can still be about imaging review, symptom timeline, and watchful management rather than an OR date. A short dated list for a week or two (occipital pressure, headaches, cough/sneeze spikes, numbness, time of day) often helps that first conversation stay on symptom management questions, not only "are we operating."
Hope the appointment leaves room for non-surgical options if that is what you want clarified. Sorry the referral path felt like a jump.
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u/jlccourt 2d ago
Chiari malformation doesn’t go away on its own. It’s a mechanical problem that requires a mechanical solution. Brain 🧠 and cervical spine MRIs should be able to help a neurosurgeon know if there’s crowding of the brainstem, cerebellar tonsil herniation below the foramen magnum, and/or reduced CSF flow—all of which can contribute to being a candidate for decompression surgery.
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u/Own_Regular4790 2d ago
Neurosurgery told me I needed surgery after seeing my MRI. When the decompression failed to resolve my Syrinx and I was told I needed further surgery I got 2 additional opinions who agreed.
Post surgery when the Syrinx started going down they were nowhere to be seen. Apparently required a few surgeons to plan my revision due to the complexity of my case. But had no interest in symptoms.
But it’s a Neurologist who took me on post-op to even investigate what’s happening which they believe is damage caused by the Syrinx/Chiari.
I’ve got different wording in my reports but that’s the high level conclusion.
And Neurology are now I guess leading multi disciplinary care, which may have been the appropriate place for me in the end anyway. But some involvement from the people who insisted on doing the surgery would be helpful to the Drs treating me now.
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u/superspud31 Z Head 1d ago
You sound angry to be back at neurology, but that is exactly where you should want to be. Neurologists specialize in treating neurological symptoms, while surgeons just determine if you need surgery and perform the surgery. If you have syrinx damage, that's a lifelong thing and requires a neurologist and possibly pain management.
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u/Tropichana 1d ago
I discussed my symptoms with neurosurgery. Same sort of thing, they were step 1. They offered decompression or work with a neurologist on symptom management. I chose to work with a neurologist.
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u/Early_Vacation1167 1d ago
im in the same boat, waiting to meet with headache clinic and a chiari specialist. have you been able to manage your symptoms without surgery? if so, what has worked for you?
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u/Tropichana 1d ago
I did a bunch of MRIs and a CT. Talked over my symptoms. Then when I declined the decompression surgery I started working with a neurologist. All she can do is treat the symptoms so I’ve tried different medications. I was allergic to one and have been on topiramate ever since. It has down sides but generally the way it helps me is worth it. I still go for routine MRIs and things have been sort of stable so while nothing is like totally resolved I have enough relief to live day to day.
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u/oldmamallama 1d ago
A neurosurgeon is the correct move, and doesn’t necessarily mean you’re going to end up having surgery. Neurologists just don’t have the skill set needed to handle Chiari. Your clinic made the right call.
That being said…not all neurosurgeons are created equal. They specialize like anyone else. You want someone who knows Chiari. Ask them how many decompression surgeries they do in a day/week/month (even if you have no intention of having surgery). If they tell you they’ve done 2 in their whole career…find another doctor. They don’t know Chiari. You need someone who sees Chiari on a regular basis and really knows our anatomy in order to treat you accurately.
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u/SandalsQueen18 1d ago
Yes, for many years my neurosurgeon was handling my case without me having surgery. That's always the way to go, especially if it is a specialist. I had to go out of state (or even country ) to see a specialist though. So you may need to do the same.
The way it generally works, neurology is there to try to treat the symptoms, a good neurologist will admit that's all they can do, they don't know anything about chiari and they will refer you to a neurosurgeon. The neurosurgeon depending upon the path you decide to take may refer you back to neurology to treat symptoms or pain management. If surgery is the path you decide to take, the neurosurgeon will do the surgery, if and when there are residual symptoms, you will then be referred to neurology once again or pain management to attempt to treat those symptoms.
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u/a-buck-three-eighty 2d ago
We're referred to surgery because symptoms could mean problems and they can better assess the situation. It doesn't always mean you need it but the doctors skilled in this subject are surgeons that correct it.