Had my decompression surgery last December. Surgery was a success (by my NS's standards). My syrinx has not gotten any larger since surgery, nor has it shrunk. (Another question...what if it doesn't shrink? What will they do?)
My symptoms are mainly the same as before, just the horrific headaches aren't as horrific. Also was dx'd with POTS.
Here's my question...
When I wake up in the morning, I usually don't feel too bad. I can do some light cleaning, laundry (carefully) and picking up around the house. If I want/need to go for groceries or to the store for something, I have to pick and choose what really needs to be done more that day. Household chores or shopping...one or the other. Fitting both in, ends up in disaster or terrible headaches and feeling like total crap! I feel like my head is spinning, like it is on overload when it comes to trying to remember things or get things done. I see that so many of you are working among other things. How do you do it? I almost feel weak, by not being able to do all these things in one day anymore. I used to work in the ICU, on my feet for 12 hour shifts. I can't even walk over a mile without being spent. Does anyone else have this problem? I wish I could just make my body go back to the way it was BC (before Chiari :).
I guess I just keep hoping that it will get better, but it doesn't seem to be letting up any.
I too struggle with overload, but i am only 14 weeks post op and no syrinx. I experienced severe symptoms before surgery that had me a day away from the ground. I have just returned to work part time and am really struggling. I understand the overload and severe headaches. I was hoping someone would say that they will go away with time. At this point, I feel better than before surgery but i am just not the same. I hope things begin to look up for you!
Thank goodness, it's not just me! I had mine in December too and haven't been able to return to work. I do an office/computer job but it's really complicated and detailed. I can't REMEMBER things like I used to, started almost a year before I was diagnosed (finally!). In addition, I have to commute 120 round trip daily and I can't drive much. Neck pain, difficulty focusing/blurry vision, equilibrium problems (I still tip over alot, run into things when I walk, fall), and the ever present headaches that vary from mild (constant)pressure to "please let me lose conciousness soon". The meds can be pretty useless. I find I am better in the morning and get steadily worse throughout the day, like a wind-up toy winding down. And you're right, I pick and choose the same way, household stuff one day, groceries and stuff another. Just wears me OUT.
I used to be SO active, my family teased me about being Super Woman. Working 8-10 hours a day, driving another total of 2.5 hours a day, cooking(ALOT, lol), cleaning, laundry. You name it, I did it. Now, nada. I do the basic chores as I can and am a COMPLETE homebody. No garage sales or antiquing on the weekends, no reading, no knitting. All require concentration, focus, or just plain energy, none of which I have.
From what I have heard about POTS, it can be completely debilitating. That along with Chiari is a lot.
I am almost back to normal after my surgery last September but I have noticed that I have to really monitor what I do. I can't go and go and go like before.
I can defintely relate. I was diagnosed in 2006 and worked up until 2008. I am no longer able to do that due to my pain, dizziness and balance. Sometime I feel helpless, not able to drive due to the pain, the medication I take and the rotation of my neck. I depend on people more as before I was totally independent. I don't see how some people with Chiari are able to work. It is risky and you are now a liability.