Chiari Online Support Group

Nearly two months post op

#1

Just after surgery, I was doing great. I was so excited. However, I knew my symptoms weren’t going to stay gone. About two weeks after surgery I got some of the worst headaches of my life. They lasted a week but I’m happy to say they’re gone. After that, I felt fine but in the past week my symptoms have come back. I know this happens. It’s only been a couple of months so I know everything is still adjusting. The only symptom that hasn’t returned is my headaches which I’m thankful for. I think a big part of my flare up is my dad pushing me past my limits. He doesn’t seem to understand the meaning of disabled. He just pushes me to do chores or help him move things until I’m completely exhausted and then he gets angry because I can’t help him anymore. Telling him no is difficult. He’s threatened to kick me multiple times before for not doing what he wants. I’m going to try applying for SSI. I’ve never been able to work so I can’t get SSDI. Hopefully, I can start receiving SSI soon. I want to save up as much as I can so if my dad ever does kick me out, I won’t be on the streets.

#2

Hey Georgia,
I’m often saying “It would be easier if I’d lost a limb, people would be able to see the issue…” But with it being invisible people say “You look OK, so what’s the problem…” You can walk, you can talk so in their mind the issue is you. WRONG.
Other’s believe that surgery ‘fixes’ the problem, “so it’s been fixed so what’s the problem…” Neurosurgery is never that simple, surgery often only unleashes a whole other range of issues. Some males have the idea that if you just ignore it, it’ll get better, but this couldn’t be further from reality. I say males because this was an attitude that was forced into me by a parent, only years later it all came back to bite me. I have subtly reminded him of this but the attitude came back as 'Well, don’t blame me, blame the medicos. They’re the ones who got it wrong" So no responsibility was taken and the attitude continues.

Now, admittedly I left that environment many years ago, but I left with no plan and that was a bad thing. I believe that making plans for the ‘what if’ situation is always a good idea and it sounds as if that is what you are doing. Trying to get others to comprehend headaches is impossible, prior to my own neurosurgery I thought I knew what a headache was. But surgery showed me I knew nothing of the extremes, ohh boy was I given an education in PAIN. I don’t have headaches, I have mind numbing explosions of agony and it’s something that if your father has never had he will never know just how bad it can be. Trying to educate others of this is impossible.

Merl from the Moderator Support Team

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#3

Today, he’s listening to me. I think he’s starting to understand. He wants help with yardwork and I tried moving a wheelbarrow and I couldn’t. He told me to tell him if I can’t do something. So I did some raking instead. Though I’m so used to pushing myself I’m overheated. I’m going to have to say I’m done for the day.

Edit: he’s frustrated but he’s at least listening.