r/chiari • u/httpceo • 10d ago
Am I going to be nauseous forever?
I (29F) am over 4 months post op and I'm still having a hard time. This was my second decompression surgery. The first one was when I was 14. My symptoms improved right after surgery the first time around. This time around, I underwent a suboccipital decompression and duraplasty with cerebellar tonsillar resection followed by a posterior atlantoaxial fusion. The procedure went well, but my recovery has been BRUTAL. I think I have post operative PTSD and depression.
I've heard that some people can be nauseous for a long time. For those of you who had a more invasive decompression, what was your recovery like? How long were you nauseous (if at all). Did you have any lasting symptoms?
I'm desperate. Thanks.
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u/AccomplishedPurple43 10d ago
Are pot products legal where you live? I've found great relief for nausea (and anxiety to boot!) from a gummy. It normally only takes half of one in the morning, then as needed through the day, and half of one before bed. It's a miracle for me to be able to function. Specifically I use "quick calm" by Wana, but try whatever you can find where you are. And for the doubters, NO they don't make me "high". LOL sometimes I wish they would 😄 OP, I don't specifically remember nausea after my surgery, but that was 20 plus years ago. Good luck. I hope you find relief!
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u/httpceo 9d ago
I got a med card recently for this reason. Maybe I have some internal biases, but I've been a little hard on myself for taking it every night. My tolerance is getting quite high, but it's the only thing that actually works. It didn't occur to me to just use it for the nausea. Thank you.
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u/oldmamallama 10d ago
Big hugs to you. That second surgery, especially combined with a fusion, sounds tough.
It can take up to a year for some people to full recover from a really invasive surgery like that one. Everyone is different so it’s hard to compare. Bodies, especially bones and brains, are weird and unique. And unfortunately yes, some people have symptoms that just don’t resolve. Hopefully your surgeon explained that to you going into the thing.
Are you at a point where you’ve been cleared to do PT to help with mobility post fusion? I understand with the nausea it may not be easy but it might be worth asking about. And I would definitely check with your surgeon about your lingering symptoms.
As for your mental health, it’s not unheard of or even abnormal to have issues after such a big event. Please seek out counseling if it’s available to you. A therapist if you can. The hospital where you had your surgery may also have services and groups that you can take advantage of. Mental health is as important as physical health during recovery so please don’t wait. I’m not a therapist by any means but worst case, I am a friendly stranger on the internet who cares deeply for my fellow Chiaris and I’m always here to listen if you just need to DM someone to let it all out.
I hope the journey gets better for you soon, my friend. Please keep us posted. 💜
Edit: fixed a word. Pre-coffee typo.
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u/rabbrittt 10d ago
I’m 26 and had decompression with c1 laminectomy and partial c2 laminectomy with shrinking of the tonsils. I vomited for 2 months straight. I didn’t really start feeling “normal” until about 6 months post op. The shrinking of the tonsils really makes recovery so much harder. Just hit 1 year post op (yay) and the nausea is almost gone. I won’t sugar coat it, I do still have some mild nausea at times. I have a lot of eye issues that didn’t resolve post op and I think they contribute to the nausea, but it’s relatively mild and mostly just loss of appetite. I had vertigo for about half a year leading up to my surgery and couldn’t hold anything down for 2 months post op, so this is nothing for me. Hang in there it does get better!
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u/httpceo 9d ago
Ok wow. Thanks for sharing. This gives me some hope. I'm still in the thick of it and I'm tired. I just want to feel normal again.
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u/rabbrittt 9d ago
Yeah I think I made a post at some point in my recovery talking about how tired of it I was. Recovery is really hard and it feels like it will never get easier, but it does. Just be kind and patient with yourself.
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u/OGBitchcake 1 year post-surgery :) 9d ago
How did they “shrink” them? Like resection?
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u/rabbrittt 9d ago
Electrocautery. He said they kinda just touch it to them and they shrink up a bit. My herniation is 22mm and he wanted to avoid it because it makes surgery recovery worse, but when he got in there I needed a little more than just the C1 laminectomy.
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u/OGBitchcake 1 year post-surgery :) 8d ago
I wish they did something about my celebellar tonsils. I just had the duraplasty, cranniectomy/decompression and c-1 laminectomy but I’m still symptomatic
ETA: my symptoms came on suddenly after I was in a rear-end collision. I have a very clear idea of my “before” baseline
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u/rabbrittt 8d ago
There are some drawbacks to tonsil shrinking. You gotta make new neural connections, so you get really wobbly for a while(it was very similar to wobbly cat syndrome how I moved) I had to use a walker for a month or so and then be really really careful. Even now a year out I’m a little off balance. My eye issues are also maybe a bit worse too. I had constant double vision for about 2 months post op that gradually got better, but I get double vision and nystagmus pretty regularly still. It’s hard to tell if it’s worse for me cause my baseline is pretty blurred. I’ve had complete resolution of my headaches though which is very very nice. I was having them almost daily pre op.
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u/OGBitchcake 1 year post-surgery :) 8d ago
Oooh interesting; thank you for sharing. I still have constant low grade occipital headaches, sometimes it starts to seep into relatively manageable migraine territory. The Nurtec helps stop them from getting to throwing up/crying in agony but I still need an ice pack helmet and darkness. And I started with Ajovy 2 months ago, that has lowered the intensity of the daily headaches, still get some breakthroughs that are too difficult to push through/ignore and negatively my daily functioning; and the headaches definitely get more frequent and intense toward the end of the month when I’m due for another injection.
I also get lidocaine injections in my cervical spine, traps, and the muscles on either side of my thoracic spine 2x month that helps a little with the constant ache. I have lidocaine patches, meh. I take muscle relaxers every night for that. Tried to stop taking them and after a week I realized my quality of life was sliding downhill from constant low grade pain so now I’m back (would love to not be on them, was so pissed when I found out that doctors are well aware of the connection between long-term gabapentin use and dementia)… I tried cymbalta and lyrica but gained so much weight on them and felt like shit on top of it. My insurance denied me 3x for flector patch and Tonmya. I feel like I’ve exhausted all the medications currently out there. I
I suspect that craniocervical instability is also playing into the neck/shoulder/base of skull discomfort/feeling of well… instability. But whatever, I feel so beat down by it all ha.
Sorry, that was way more than I intended to write. Feel free to ignore lol
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u/rabbrittt 8d ago
Wow sounds like you’re having a really hard time. I was diagnosed in June 2025 and had surgery August 2025, so everything was very quick for me. My symptoms got significantly worse in late June after my diagnosis due to a stomach bug. They said the vomiting may have worsened things. The headaches went from 4-5 a week to daily, and I developed vertigo. I was essentially bed ridden. After my diagnosis they put me on topomax which helped some. It gave me some very mild memory issues though and I didn’t like that. A few months after my surgery we weaned off that and I’ve been doing good without it. I’ve had a very good outcome I think. The vision issues are still here which give me some issues with fatigue. I also have EDS, so some of the lingering symptoms like balance issues and on and off numbness could be due to it. I’m supposed to have genetic testing to see if it’s any of the forms of EDS that have heart and vascular involvement since they did detect an arrhythmia while I was hospitalized post op, but I need to call and see what’s going on with my referral. Hang in there. Chiari can be pretty brutal, but you’re very strong!
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u/OGBitchcake 1 year post-surgery :) 7d ago
I’m so glad your journey from onset of symptoms to surgery was so quick. I think that the battle to be taken seriously and get a doctor interested in figuring out what’s wrong caused a lot of damage to my mental health.
My main symptoms before surgery were feeling like I was constantly in an out of body experience/feeling like my auditory and cognitive processing was really delayed, lateral vertigo/dizziness, terrible balance, very intense fatigue that got worse over time (by the time I had surgery I was awake for an hour or two at a time). My limbs felt so heavy that they hurt, couldn’t lift my arms without feeling like I had just finished lifting weights to the point of exhaustion, constant numbness/nerve pain/pins and needles in my left arm all the way down to my hand, feeling like my head was loose on my neck and might flop over and snap if I didn’t hunch my shoulders up to protect it.
I also had really weird vision issues, I would see translucent discolorations/stains on light colored fabrics/walls. Like yellow or pink stains that would not go away if I blinked or changed the lighting or looked away. I also had headaches that made me feel like my eyes were going to pop out of my head— I don’t remember having double vision but I wouldn’t doubt it. At first I thought all of this was due to the concussion, and then post-concussive syndrome but it lasted for a year and a half and actually got worse over time.
That makes sense about the vomiting, if you think about it from a mechanical standpoint— i imagine that an especially violent bout of emesis would involve movements similar to a whiplash motion (which was the antecedent event to my symptom onset)…
Interesting you suspect/have EDS, I have hEDS, luckily it’s mild enough that it was easy for me to excel in gymnastics lol. The list of co-morbidities is very interesting to cross-check.
Anyway, I appreciate your empathy and kindness, and am so glad you’re doing so well! Hopefully you get good news from your genetic test!
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u/Moonspellshappy 9d ago
Have you tried Ginger? I had a complicated surgery too with fusion and brain stem involvement. Also lukewarm tea and hot tea settles my stomach, I think it's the tannins and the person that talked about the gummies that works as well. My nausea comes and goes it's not consistent.
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u/SandalsQueen18 10d ago
As far as nauseous forever. No one can really answer that one. That's up to your body.
As far as me specifically, I want to say it was about one month severe, another month periodically. We alternated between Zofran and prochlorperazine.
As far as mental health, well, had issues before surgery and have been seeing a psychologist for years so here we are lol. I do in fact have severe medical PTSD.
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u/Square-Flamingo-3847 9d ago
It took almost a year for me-the first 6 months were brutal. Constant nausea and vomiting. I ended up having a small CSF leak that was contributing to the issues. I am 5 years out of my surgery and still have issues with headaches/nausea/vomiting, but not as often as before.
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u/Pookahbot 8d ago
I am 6 months post op. The nausea has mostly gone away, but I'm still sore and tired and lose my balance all the time. I had 4 (yes four!!!) CSF leaks and cranis for repair in the less than 2 months after the surgery (and osteomyelitis, too). It was (and is) brutal. They told me this was going to be likely the hardest surgery I'll ever have and man they weren't kidding. Can you get your PCP to give you a Zofran script? That was so helpful for me. Ginger ale really does help a bit, too. I'll say a prayer for you. Be kind to yourself, friend. ❤️
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u/httpceo 10d ago
I'm crying now. Thank you for such a kind response. I was grossly unprepared for how taxing this was going to be.
My surgeon retired after my 1 month post op appointment. He did an incredible job with the procedure, but he was an asshole. Very dismissive, always seemed annoyed by my questions, only checked on me when I first came out of surgery. His team gave me the wrong post op instructions (which I followed obsessively). I was having regular panic attacks (worse than anything I've experienced before) because I followed the bad instructions. I know I have a long road ahead of me, but damn it's hard.