Chiari Online Support Group

How long does it really take to recover? getting worried

Hi Everyone! I’m almost eight months in recovering from decompression surgery (Aug 17) How long does recovery really take? NS said about six to eight weeks but at eight months i’m still in terrible shape! I’m getting worried! is this normal? im dealing with more Nausea, balance issues, trouble walking, muscle spasms etc. than before and some new symptoms Strange new aspirational issues after surgery I know the surgery isn’t a cure but I was hoping for improvement not worsening of symptoms.

Is there hope? Has anyone else taken a long time to recover? please help!

I’m praying for you. I’m in a similar boat. I’m 3 months our from surgery and feeling no better than prior to surgery. There is always hope. Continue seeking answers and doing research, but don’t lose sight of hope!

I was the same way after my surgery. Thought the dr knew what he was doing and turned out he ignored some super major things for me. I ended up doing more research and two True Specialists opinions later (had to go to another state) I got the right surgery I needed and Bam!!! Huge difference within just two days!!! Walked 5 miles the week after surgery!!!

I’m in exactly the same situation.
Wow @Tnydancer can you tell us what your first surgeon neglected to do for you and what was done to fix it?
I’m 10 months post op, surgery hasn’t helped in fact its caused some different pains.
I absolutely know there is still a problem.
I also know that my surgeon didn’t open my Dura.
So I’m wondering if this could be the issue or whether there is something else to consider.
I’m interested in what was done for you because I nearly cry with joy at the idea that its possible that there’s a chance that I could get my life back.

All the bestest X

My specialist said it looked like the first dr got in their and started doing what I needed him to do but then got in a hurry and didn’t finish the job but just closed me up.
He had ignored my brainstem compression by a retroflexed odontoid and basilar invagination. He had no clue what to do with me.
I ended up in NYC with Greenfield that deals with complex chiari but also majority of his work is revision surgeries from other drs screwing people up.

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Greenfield revised my decompression, fixed my RO and BI and fused a bit for my cranial settling. I’m 6 months post up and still feeling great. Only thing is my neck muscles are still adjusting and getting stronger still 100 x’s better

Thanks for the info - I have a retroflexed odontoid

What was done to fix it for you?

I must have replied before receiving your last message.
I’m so happy for you. This is a dream come true.
It also gives me hope
Thanks for sharing X

Hey Warrior,
With a broken bone ie leg or arm 6-8weeks and the bone has heeled, but that’s bone, not brain tissue. With my last surgery I was told something similar to you “6-8weeks” and sure the craniotomy site had fused but everything else was still an issue. I am now 5yrs on from my last surgery and still having daily battles with the same '…Nausea, balance issues, trouble walking, muscle spasms etc…" as you.
Some dr’s told me “They operated, they fixed… …it’s all in your head” (as if I didn’t know THAT already lol) as if this is all by choice. Some medicos make out they have all of the answers but the reality is far from it. Most of my symptoms are considered neurological rather than physical and it seems there is very little they can do to relieve them short of high dose opiates, which space me out so badly, I’d much rather not take them at all.
So all I can really do from here is learn to manage the best way I can. Learn the triggers, learn the pains, learn new ways to cope, make the adjustments I can and ‘try’ to move on. I say ‘try’ because some days I can other days I can’t. This is nothing like a broken bone where after 6-8weeks everything has healed, for me this has been years of adjustment on top of adjustment, and still today more adjustment is needed depending on need. We have to learn the best way to manage for ourselves. The dr’s may make out they have ALL the answers, they don’t.

Merl from Moderator Support

Hey Merl, thanks for the reply! well said. Five years on, wow! Looks like I’m going to have to wait it out big time. The doctors seem to think they know everything but they don’t. The medical profession seems to be all about money and sadly the people are forgotten. Chiari is a real battle All we can do is fight it every day I guess. Sorry if my post came out as desperate I’ve just been so stressed with all of this in the last few months. Its been a hell of a ride. My first decompression when I was a kid went off without a hitch but round two has been miserable. Thanks for the support everyone.

Hey Warrior,
You’ve been so stressed you say? I can’t think why lol Our brains are one of the most complicated organs in the body and they control EVERYTHING, so why have you been stressed? Personally I’d say if you weren’t stressed there’d be a problem. As for the medical profession… …grrrrrr. They can be so dismissive, they treat the body like a machine as a mechanic would a car, but we have to live this, not them. You don’t come across as desperate, you come across as concerned.
As I say I’m 5yrs on from my last incident and been told that for me this is about as good as it’s going to get, but that’s me. Some people can have surgery and come out the other side 100%, so I wouldn’t be using my example as a ‘normal standard’. Some people (me included) have an expectation of that ‘100%’ then blame self when it doesn’t happen. Just know that not every case comes out 100% but by the same accord not every case comes out in my condition either. My first 3 surgeries went OK, not great but OK. The last 3 knocked me worse and worse. As you say “…Its been a hell of a ride…”
Merl from Moderator Support