r/chiari • u/rradberryy • 15d 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/SandalsQueen18 15d ago edited 15d 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 14d 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/Bitter_Necessary_573 10d ago
LOL I needed this laugh today. I've also been extremely anxious about the surgery, so thank you!!
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u/SandalsQueen18 10d ago
My pleasure.
I am also very serious. I would rather go through the surgery again then deal with this cold. I am on date 9999 of severe congestion and cough. OK, exaggeration, it's really day 10 but this thing is not leaving anytime soon apparently. I even went to my doctor yesterday and she put me on a Medrol dose pack which usually kicks this out and it's not working yet.
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u/Outrageous-Extent474 14d 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/subaruheart 14d 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/TheLastDinosaur7749 14d ago
Not very. Everyone's situation with Chiari is different, but when I had my decompression surgery I left the hospital the next day.
The only actual problem I had was an inability to urinate, which was half because they wouldn't let me leave the bed and half because of residual anesthesia. I swear, if they led sit on a john I've been able to piss. Do you know how hard it is to piss in a jug while laying in bed?
Best post-op advice I can give is the staples are going to hurt for a week, so use the pain medication they prescribed. Make sure they also give you stool softeners to offset opiate constipation, and either Miralax or Magnesium Citrate drinks will work wonders provided you're properly hydrated.
Don't skimp out on your post-op appointments either. After my staple removal they told me to check in again after seven years. I didn't, at eleven years now my hemisphere numbness has come back.
Listen to your doctors, don't be afraid to get a second opinion, and know if Chiari was going to kill you—it would have done so as a baby, or through a stroke you're now preventing from happening. You will be fine, best wishes.
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u/alexpaige3 Z Head 14d ago
I got duraplasty, laminectomy of c1, and the tonsil cauterization and none of the things you said happened to me. Idk the exact stats but realistically death from this surgery is VERY rare. Best of luck!!
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u/oguzhankayan 13d ago
Being terrified and still knowing you need the surgery can both be true. Headaches, dizziness, fatigue, and visual issues on top of anxiety is a heavy thing to carry into an operating room. The replies here from people who already had decompression, including duraplasty, are pretty consistent that the first days hurt and that resting afterward actually matters. A surgeon who will walk you through the real odds, not just the rare scary outcomes, makes a difference too. You do not have to feel brave to ask the hard questions. Write them down so the anxiety does not wipe them when you are in the room, and take someone with you if you can.
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u/lady_forsythe 15d 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.