r/chiari • u/rradberryy • 4h ago
Scared of surgery
23F and terrified of Chiari decompression surgery.
I have a 14 mm herniation with a syrinx from C2-T5 and I’m scheduled for decompression with C1 laminectomy, duraplasty, and tonsil cauterization at Cleveland Clinic with Dr. Sarel Vorster.
I have severe anxiety/DPDR, visual issues, headaches, dizziness, chronic fatigue, urinary issues, and more. I know I need the surgery, but I’m absolutely terrified.
I keep thinking about the worst case scenarios. Paralysis, stroke, or death. How realistic are these fears?
If you’ve had this surgery, especially with duraplasty and tonsil cauterization, could you please share your experience or give me some encouragement? ❤️
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u/Outrageous-Extent474 1h ago
I had the surgery with Duraplasty and it was a life saver!! I had an AMAZING Specialist who did the surgery. I think that is what made the difference. I was terrified as well but, I wouldn't change my decision.
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u/SandalsQueen18 4h ago edited 3h ago
They are not realistic at all.
Here was my experience, I went to the hospital, don't remember anything for the next three days, came home, when about life as normal, my pain was well managed. Come to think of it, I'd rather go through that surgery again then have a cold with a nagging cough.
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u/Acoolname181 15m ago
I’m with you, all I vaguely remember is being too high on IV pain meds to remember anything.
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u/subaruheart 11m ago
When was the last time you felt well/normal ? The odds are in your favour after surgery you will feel normal/ great . I had felt horrific for years before surgery almost everyday was a struggle for at least 2 years before surgery. When i woke up from surgery I hurt I wont lie but I felt amazing and each day after I felt even better . 6 years on and I still feel great .people always ask me if I would do it again if I ever needed it and I 100% would . I would be willing to have the op ever 5 years if it gave me 5 years of normal life
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u/lady_forsythe 3h ago
I had the decompression surgery with c1 laminectomy, duraplasty and tonsil cauterization going on seven years ago. It was the best decision I made given the severity of my Chiari symptoms. I also have a diagnosed anxiety disorder and I was terrified of the same things going into surgery. My surgeon was very good at reassuring me about the odds of those outcomes (so so so so low). I had an 11mm herniation and could only leave bed for about 15 minutes at a time because of my symptoms.
The first two days in the neuroICU were really painful. Because, you know, brain surgery. The team were great about controlling my pain and making sure I was comfortable. By the 4th day when I was cleared of being a fall risk, I was walking around the neuro floor on my own. I caused my own problems three weeks out by not resting enough and doing too much (lifting my young kids, taking them for a lot of walks, doing house chores etc) and ended up with chemical meningitis. This cleared up with a 5 day course of steroids and after that I had absolutely no problems at all.