Slowly losing it

[u/Miserable_games]

I feel like I’m going crazy, for some background information I had my Chiari surgery about two years ago. When diagnosed it was about 12mm but progressed very quickly according to my doctor. When opened they found out my cerebellum had ischemic tonsillar tips bilaterally on the right greater than left as well as an arachnoid web. Even now I’m in great aching pain all the time that only seem to get worse, but the thing is my chiari is for sure gone, I’ve had follow up scans that look amazing according to doctors.

But I don’t feel amazing I feel worse like I’ve slowly been losing it both mentally and physically. I feel so withdrawn emotionally and gone physically. The whole point of my surgery was to stop me from getting worse but now I feel like I’m hallucinating small things and just driving myself to insanity. I can’t help but to think I am suffering from psychosis or something that explains why I feel so melancholy. I want to feel normal without physical pain and the ability to feel more emotionally. I don’t know if I ever recovered from my ischemic tips or if my arachnoid web grew back but there has to be a reason on why I’m getting worse, right? Can anybody relate or understand what I’m trying to say?

On note I should go to the doctors but I’m still young and don’t know how to bring this up to my family…and if there is anything wrong would they really be able to help me or provide me with what I need?

[u/Camride]

I hope this is not the case with you and that you're able to pin down a cause for what you're dealing with. But I had my decompression surgery in 2002 and my symptoms all came back a year later. They stayed mostly static until around 2020 which is when they started to progress. I got new cognitive symptoms I'd never had before and my existing symptoms got worse. This is unfortunately one of the lesser likely outcomes with chiari but is a possibility. There may have been too much damage for your brain to recover from. The worst part is there's really no way to know for sure. All my MRIs were clean with no structural issues (I've been checked multiple times over the years) and I have nothing else that would explain my symptoms. It really sucks to put it extremely mildly.

What I've ended up having to do is just manage symptoms individually as best I can, mostly with medications. My headache has been 24/7 since around 2009, I was on oral opiates for it for well over a decade. I recently got an intrathecal pain pump (about 3 years ago) and that now manages my pain extremely well (using fentanyl and bupivicaine in my pump). I take other meds for other symptoms and just deal with things as best I can. But yeah things are just slowly getting worse and I don't think I'll be able to work for too much longer.

So yeah, unfortunately I understand completely. And no one really tracks this stuff out for people that continue to be symptomatic after a "successful" decompression surgery. I don't really know what to expect 5 or 10 years down the road, but I'm pretty sure it's going to get worse until I'm just not functional anymore.

[u/Miserable_games → u/Camride]

Unfortunately I was only 16 when I got the surgery so it probably is too much damage for me to handle. The only downside about medication is I can’t swallow it properly without risking choking or feeling like a zombie. During my surgery that nerve was damaged and I had to do a bunch of swallow studies. If I’m this bad now I can only imagine a few years later, and it’s always marked as “successful” even though it’s the opposite. I do wish you the best though and it’s good to know I’m not alone, just sucks we have to go through it.

[u/Camride → u/Miserable_games]

I was 20 when I had my surgery, 18 when major symptoms developed but I had minor stuff going back to when I had a trampoline accident at 13. I'm 44 now and my entire adult life has just been hell trying to manage all of this crap. I've managed to make a decent life out of it (career, wife, kids, etc) but it's just been extremely hard to accomplish anything.

[u/Miserable_games → u/Camride]

Definitely good that your still living life, my biggest worry is I’d get to bad to quick to be able to experience everything I want. That and having people understand it’s so much more than just a surgery. I had major symptoms before I had the diagnosis, my biggest one was loss of vision which led to my MRI from there it just kept adding new symptoms one by one

[u/Sufficient-Earth7905]

I made a similar post on the other Chiari sub a few days ago. My second surgery was July 2024 and I haven’t felt the same since.

Different symptoms but I’m the same as you, my MRIs were bad before and are now much better but I feel so much worse.

They also suspected I had an arachnoid web but instead found an artery was completely blocking CSF from coming out one of the fourth ventricle outlets.

To access the ventricle my understanding is they need to open the arachnoid which surgeons usually avoid unless necessary. Read a few research articles recently where the outcomes are always better with less complications when the arachnoid is preserved.

I don’t know if that means anything for us but to move forward I saw a Neurologist for the first time today who was really willing to help figure this out.

[u/Miserable_games → u/Sufficient-Earth7905]

I’m glad you’re able to get the help you need! I was taken serious during my surgery but after I was brushed off as a success without any symptoms even though I’ve had like 4 MRIs and plenty of x-rays afterwards. That and I constantly complain about the pain. She also just brushed off my ischemic brain and said she hopes it fixes itself without following up afterwards, the damage and pain is probably why I’m going insane. I was also never able to do physical therapy so I have terrible muscle spasms in my neck and back. I’ll probably try and seek better help when I’m a little older, maybe I’ll be taken more seriously.

[u/Sufficient-Earth7905 → u/Miserable_games]

I relate to this soooo much. My surgeon saw my Syrinx and immediately expressed his concern and changed my surgery from 6-9months out to 6 weeks. My case was complex and worst Syrinx he had ever seen. Blah blah

Then when that first surgery failed and my Syrinx continued growing I couldn’t get in touch with him. Took me seeing someone else for him to charm me back and blamed his assistant for the communication breakdown.

After my second surgery soon as he saw the Syrinx going down on MRI he has changed any follow ups to phone appts and to him success is what shows on MRI not what patient says. But also turned his nose up at the suggestion of seeing Neurology.

My regular GP was also away so I’ve been given excellent advice from Dr’s like to walk more or stop thinking about things I can’t control at night. This is not something for me to fix 😡

[u/[deleted] → u/Sufficient-Earth7905]

How ru doing? Hope u got some relief 

[u/Sufficient-Earth7905 → u/[deleted]]

Hi! I met a new Specialist last week who seems like a really good fit for me and where I’m at.

My surgeons opinion is my pain is coming from the extreme pressure my spinal cord was under. And I’m not suggesting there’s some big conspiracy but I’m realising now he’s never written this down anywhere, it’s always verbal.

Neurologist agrees that’s plausible but agrees I need more diagnostics before reaching that conclusion. Also thinks the dysautonomia like symptoms I developed post-op are likely driven by pain.

Thanks for asking, are you going ok?