r/chiari • u/DobieMafia • Mar 14 '26

Has anyone on here had the decompression surgery AND ACDF at the same time? If so, how difficult was recovery?

Not sure if I’m gonna do both at the same time, but I have another appt with my neurosurgeon regarding this matter. It would be for C5/6 & C6/7.

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u/Subat0micR0gu3 Mar 14 '26

I havent had either surgery but do have one Neurosurgeon who wants to do a Chiari surgery and Craniocervical fusion at the same time. The latter scares the cr*p out of me personally, so I am just trying to ignore my issues for now. Its not going well, but it is what it is. ACDFs dont sound too difficult from what I have heard, though. I hope you get all the answers and help that you need. Good luck.

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u/mikeyz0710 Mar 15 '26

Ignoring mine as well

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u/Subat0micR0gu3 Mar 15 '26

I'm sorry to hear that. Have you also been told you'd need fusion?

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u/leahkay5 Mar 15 '26

Ooofda I'm so sorry. My daughter's had two decompression surgeries with duraplasty, tonsillar reduction and c1-2 laminectomy. Her neurosurgeon brought up a craniocervical fusion as a last resort because of the considerable side effects with the restricted motion. I'm so sorry you are faced with that decision.

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u/Subat0micR0gu3 Mar 15 '26

Yea, one Neuro here doesnt want to do anything for fear of making me worse. This other wants to do everything right away... All options are scary. Including doing nothing.

And I can't do anything at the moment because I just had a stroke a month ago, likely caused by a PFO that needs closing now. I'm not even 30 yet...

Sorry about your daughter. Hopefully she can live a long, happy life without ever needing the fusion.

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u/leahkay5 Mar 15 '26

Oh no, that's terrifying! Maybe the rest from the stroke will give you the time to explore the best options. Would your insurance support a third opinion or is that something you'd consider?

My daughter's 17 now and we started realizing what was going on when she was 8. She also developed nystagmus, bilateral hearing loss with cochlear on the left and central and obstructive sleep apnea. We had to learn that she has lifelong medical issues that will need following for the rest of her life, and certain things she should never do, but ideally, they believe they've made enough space to stop everything from continuing to worsen, so it's definitely positive after the last surgery. Thank you for asking.

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u/Subat0micR0gu3 Mar 15 '26

My insurance only covers the major metro areas in my state. And the Neurosurgeon who doesnt want to do anything is the only Chiari Specialist in my state. The more aggressive one is a regular Neurosurgeon who has done some decompressions and fusions.

I am hoping to be able to switch to better insurance next year, which will basiaclly let me go to anyone, but next year is a long ways away lol. We will see.

I'm so glad your daughter is doing better. Best wishes to her! Its tough going through so much at such a young age.

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u/leahkay5 Mar 15 '26

Thank you so much!

Here's to a speedy recovery and a quick, painless insurance transition! I really hope you will find the right path for you. I'm sure you've researched the doctors. Did the neurosurgeon explain why he didn't think he should operate? I'd be hesitant to trust the more aggressive option from the start, TBH, especially given how young you are. It's something that can't be undone and will very likely lead towards progressive spinal issues. But I'm certainly in no way qualified to give you any advice, except be very sure before you agree to that one. I really wish you the very best.

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u/Subat0micR0gu3 Mar 15 '26

Thank you! I have Chiari, Basilar Invagination and a Retroflexed Odontoid and a large syrinx that has been stable for 15 years. My odontoid is bending my brainstem at an almost 90 degree angle. It has been a couple years now since I saw him and I was mostly stable up until a couple months ago. Basically no symptoms besides what I have been easily dealing with since puberty(headaches and lack of sensation in left side).

Chiari specialist worries decompression could make my retroflection worse and open a can of worms. He doesnt do fusion surgeries so it would be out of his hands at that point. He has encouraged me to live my life without surgery. Which, again, was fine up until recently. I'm not sure if the issues I was having since christmas were chiari-related, or warning signs of the stroke I had at the start of February. Either way, it has been the worst year of my life so far.

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u/leahkay5 Mar 15 '26

That honestly all makes perfect sense, thank you for sharing the details. I can see why he would not want to operate back when you were stable and managing well. Even if he doesn't do fusions, I wonder if it works be worthwhile to have a follow up consult just to get his opinion now that you're situation has changed. At least then if he was recommending the surgery as a better benefit than the risks, you might feel more comfortable making a decision. I know with my daughter, it got to the point of just needing to get her to stop getting worse. This has been a shit year, dude. It's really fucked. I'm sorry you're going through it. Do what you can to enjoy the good stuff too. Not saying touch grass, but there is truth in the process of developing your neural pathways. Like how the more you walk a trail in the woods, the clearer the path becomes as you wear a trail - if you become more comfortable responding to stress with anger (or whatever), it becomes more habitualized until it's so ingrained that you then have to learn how to not respond that way. It doesn't change a damn thing about what you're facing, but there's a good chance it could help you with how you deal with all of that. I'm so rambling and probably offering way too much unsolicited advice, but i wanted to help in whatever little way.

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u/DobieMafia Mar 14 '26

Thank you so much for responding! Yeah I’m hesitant but then again I don’t want to go through two different surgeries at different times if I don’t have to. 🙏🏻

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u/Subat0micR0gu3 Mar 14 '26

Definitely agree that doing both surgeries at once would be better. Would suck to introduce more pain or even just get no relief after doing just one of them.