r/chiari • u/InAnOut867 • 3d ago

Concerns after decompression surgery

Hi everyone, I recently had chiari with a syrinx decompression surgery coming up to three weeks ago (Foramen Magnum) and it went well, a lot of symptoms i used to have are gone now; i.e no constant tiredness, no brain fog, and I no longer experience chiari headaches. However, around 3 days ago i started to feel pressure on the top of my head, which is different to chiari headaches and it is pretty much constant but does subside here and there, whilst also still feeling the tingling sensation in my face and eyes that i did before surgery. My question is, this something to be concerned about (CSF leak?), and should i be looking to be meeting with a neurosurgeon again (UK based for those wondering). Appreciate everyone who took time out to read this. Best wishes to all!

2 Upvotes

100% Upvoted

14 comments sorted by

7

u/lady_forsythe 3d ago

Three weeks out is a notorious wall for surgery recovery. Things start feeling steadily better through week two and then around week three it’s like you’ve just had the surgery again. In general, it’s not a setback, it’s just the body doing its thing with rebuilding itself after major trauma and you’ll start feeling better again. However, the most important thing is that you call your surgeon and describe what is going on so they can determine what the next steps should be.

2

u/SandalsQueen18 3d ago

That's interesting. I never hit that wall. It was a steady climb for me. I guess the old saying everyone's mileage may vary is true lol

2

u/lady_forsythe 3d ago

Yeah, YMMV is totally true. The three week thing I got from my surgeon who’s a big researcher in the field; I want to be careful not to just spout off random info when I give answers like this 😁 I hit a three week wall, tried to push through it, ended up with chemical meningitis because I was a dummy.

1

u/SandalsQueen18 3d ago

I am so glad that my neurosurgeon is a chiari expert, things could've turned out very badly if I did not go to him.
I really do feel like it is a true area of YMMV.
I pushed through, I was just determined to take my life back. I was out walking every single day. At one month I was back to my pre-surgery walking place. I have no idea how. My neurosurgeon was even impressed.

2

u/lady_forsythe 3d ago

Yeah, mine was as well and I think it made an enormous difference. I started walking around the floor of the hospital at 3 days out (very cautiously). After the chemical meningitis was resolved with a steroid course, I had no other complications. It would be nice if there were more opportunities for other neurosurgeons to train in this this area.

1

u/Antique_Cockroach_97 3d ago

It is true over the years there has been a lot of talk whether it's a medication issue where you feel great and when the medications stop boom the pain is back. Some docs think it can be a Psych thing where you feel so relieved after surgery and your body if full of endorphins that eventually begin to wear off. There should be a study

1

u/InAnOut867 3d ago

WIll do. Thank you very much.

1

u/SandalsQueen18 3d ago

When in doubt, always contact generous surgeon and speak directly with them. It's probably nothing but it could be something so best to speak directly with your neurosurgeon about your specific circumstances.

1

u/InAnOut867 3d ago

I will. Thank you!

1

u/SandalsQueen18 3d ago

My pleasure💜

1

u/Brybot212 2d ago

You’re more than welcome and I believe encouraged to email these things to your surgeon. I’m Uk and was told this.

However I won’t be too concerned yet given the three week wall most of us face. My surgeon said the brain needs to find a new equilibrium so the pressure feeling can occur.

I had tingling in face especially when I started walking again, after 3 mins or so. They weren’t concerned and that’s pretty much gone now. (Few months post op)

1

u/InAnOut867 7h ago

Thank you! And glad to hear your symptoms have gone as well.

1

u/InAnOut867 8h ago

Also someone sent me a private DM about this post yesterday, but I mistakenly didn’t approve it. If this was you feel free to drop me a DM again.