Hope everyone is feeling pain free today! I had a few more questions about this lovely disease and since you all were so helpful last time, I figured I'd throw them out there.
1. The fatigue. I've heard it's caused by chronic pain, but I am lucky enough not to experience too much pain on a daily basis, it's pretty minimal. It's also not sleep apnea - some at home tests showed the possibility of central apnea and the doctors didn't believe that would be possible in a 20 y/o so I did an over-night test and it came back negative. What else could cause the fatigue? Would it get better with treatment (decompression, etc)? How do you guys deal with it?
2. Can the cerebellar tonsils ever...resolve themselves? I'm waiting for my diagnostic MRI (could take several months to get) and I'm pretty convinced Chairi is the issue as it describes all my problems, including my dilated pupil. When my pupil first popped up 6 years ago, my MRI stated I had "low-lying cerebellar tonsils" but no mention of Chairi or a measurement. If I had low-lying tonsils when I was 15, I should still have them right? Like there is no way they have sucked themselves back up into my brain and I'm barking up the wrong tree thinking it's Chairi?
3. I know decompression is a treatment, not a cure, but does it resolve/improve certain issues? Like cognitive problems? I'm an english major who is now having trouble finding words, spelling things, major memory loss (I just to have a photographic memory) and I've developed a bit of a stutter as a result. Has surgery ever improved issues like these?
4. Has anyone else experienced a dilated pupil as a result of their Chiari?
5. Does anyone experience pain more on one side? For me, my pain is mostly on the right side - the right side of the neck, right ear, right side of the back of the head. Is it normal to hurt like &*^%ing crazy if you touch a certain spot on the back of the neck (right where the neck/head meet?)
6. Will this always impact my life? I know it varies from person to person, but I'm just trying to figure out a future career/if it will even be possible to work in the future or have a family or live life normally. Is it possible? This has been running through my mind lately and it's scaring me.
7. Finally, an opinion question. I don't know what a Chiari patient should or should not do, as I am still undiagnosed, but I currently work for a wedding photographer. This year, I'll be working 10 hour days in blazing heat as we shoot 32 weddings from April-December. My job mostly consists of wearing a 50 lb backpack the entire time, holding flashes/light umbrellas, carrying heavy equipment, walking long distances. I am already obese, which makes it harder, and I barely survived last wedding season (I needed at least 2 days to recover from a wedding, and I was no where near as bad last year as I am now, now I have hand/arm tremors and weakness, numbness, vision problems, worse fatigue and pain, etc). My question is...if I do in fact have Chiari, is this job too much? Will it be a risk or make things worse? Should I quit? I'd appreciate your opinions.
I'm sorry for this giant list, but you guys seem to be the only ones who understand. Many thanks in advance to anyone who reads through and answers the questions!