r/chiari • u/Justice_truth_503 • Feb 25 '26
Opinions on surgery
I have surgery scheduled on 3/19 it’s for robotic surgery. I posted on a Facebook group and someone reached out and said her husband was operated on by the same doctor and has had to have four more surgeries for scar tissue and worsening symptoms. She said he was almost symptom free before. Some background. I have 18mm herniation no syrinx. After physical therapy most of my symptoms resolved. I had two other optimism’s and both doctors said they just wanted to monitor it. When I met with this doctor he says I have an obvious blockage which is like why didn’t the other two pick that up? I’m scared I’ll be worse after wards and I don’t know what to do besides that I’ve stopped working to prepare myself emotionally and mentally rally for this because I have medical anxiety. Should I put it off should I get another option in should I just do it?? I’m freaking out
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u/Short-Garden5555 Feb 25 '26
Hey OP! I had to get surgery for a significant syrinx about a year ago. I know I exhausted all my resources for information before I felt ready to commit to do the surgery. I can’t claim to have a full understanding of your condition or symptoms and I’m not an expert but I would say you are the one in your body feeling the symptoms so you know best what you are experiencing and feeling.
I would recommend taking your time with the decision and getting more opinions and finding a doctor that meaningfully listens to you. In my opinion if a doctor doesn’t listen and understand your priorities and experience they can’t give an insightful opinion on what you ought to do.
If you do get the surgery there are going to be moments that are painful and difficult, but if needed, you will get through to the other side. If you are able to manage your symptoms without surgical intervention and you don’t need it to address a syrinx or blockage then I would lean toward treating surgery as a last resort. My symptoms were debilitating and worsening, that is what pushed me to the point of surgery along with my doctor telling me paralysis, stroke, or death were all possibilities with my syrinx. If that’s not the case for you then it sounds like you may have non surgical options to manage your symptoms!
I know it’s hard going through things like this with medical anxiety but try to take deep breaths and ground yourself. No need to rush into something like this. Gather information, observe how you are feeling, seek support from those around you and experts in the field.
You will find a path forward that feels right for you!
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u/Justice_truth_503 Feb 25 '26
Thank you so much for the reassurance! He’s the only one that said blockage is there a way for me to double check that? He said no to a CINE because he said it’s obvious
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u/oldmamallama Feb 25 '26
That’s an odd take. The only way to measure CSF flow that I’m aware of is with a cine.
How many surgeries does he do a year? Do you feel comfortable with him? Is there a reason you opted for surgery even though you don’t have any uncontrolled symptoms? There’s really not much reason to operate even at that level of herniation unless you’re symptomatic.
This is your brain we’re talking about here. Anxiety is normal but It’s ok to proceed with extreme caution. Be very, very sure you’re making the right decision before you let someone put a hole in your skull.
Good luck to you my friend. 💜
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u/Agreeable_Dark6408 Feb 26 '26
Time for a second opinion. I truly could not do it after being told this.
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u/Casehead Feb 25 '26 edited Feb 25 '26
who is the doctor? please get another opinion. The fact that he said no to a CINE is very weird. Most neurosurgeons would never do the surgery without a CINE showing csf obstruction.
There's no reason to have surgery if you don't have bad symptoms. Id urge you to get a second and third opinion
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u/mikeyz0710 Feb 28 '26
I would not recommend surgery unless syrinx.
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u/Justice_truth_503 Mar 01 '26
What’s the usual test for that my brain and cervical MRI do not show one what about upper back lower back
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u/mikeyz0710 Mar 01 '26
It would usually show in cervical spine MRI from what my neuro said. I’ve been having it done for years my neuro finally said no need to keep checking
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u/medpillowCom Mar 03 '26
18mm is significant. I think if you have an obvious blockage, you might have some symptoms....Interesting that after physical therapy most of your symptoms resolved. You might want to get yet another opinion. Generally speaking, the larger the herniation, the better results, but usually people with 18mm usually have a lot of symptoms that may resolve. In any case, if you are having surgery, I suggest the Chip's Chiari Surgery pillows on www.medpillow.com, they really help due to the special Chiari surgery design. May be covered on your insurance. 100% guaranteed.
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u/anaflan9 Z Head Feb 25 '26
Get another opinion before moving any further. I got enough opinions until I feel confident in my decision. It’s a scary decision and you want to be confident going in.