Quote:
Originally Posted by jjl5031
Hey everyone,
My girlfriend is scheduled for decompression surgery Jan. 18 and her post-op care is something that's on my mind -- among many other things -- so I thought I'd write with a few questions.
For those of you who have had decompression surgery, what are some things family members and/or significant others did for you that really helped you out? Of course, with as crippling as the post-op recovery can be, I realize the obvious things like household chores and all of that will be on me. But I'm interested in hearing things that aided you in your recovery that you couldn't have planned for before having surgery. I get that every person's circumstances and recovery are so unique with CM, but I figure the more stories I can hear, the better.
Also, what frustrated you the most after surgery once you were home? What obstacles did you run into that you couldn't have envisioned as far as post-op care, and how can those obstacles be avoided for other CM patients?
And what did you wish your significant other or family members understood about your recovery that they just couldn't grasp because they weren't the ones living their lives with this condition?
Thanks in advance for any insight, advice, etc.
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The worst thing that i have come across with is the LACK of information for AFTER surgery.. for example: my boyfriend had the surgery three months ago & has had a few headaches but they dont tell you what that means if you have headaches. like is it just a regular headache or is it the brain sloaping back down? also he doesnt sleep too well anymore & his dr just said its bc his sleep schedule was messed up during surgery. they didnt tell us that when his head healed it would be a funny shape bc of where they took the skull out. just little things that most people would be curious, noone seems to know the answer to bc noone seems to know about chiari! its very frustrating! just make sure you have a good surgeon & a good medical team for after the surgery. and be there EVERY minute for ur girlfriend. its a comfort thing.. when i was in the room when my boyfriend was in the hospital, he was calm & relaxed, when i would leave the room his anxiety would go up! so just be there, thats really all you can do, and whatever they say they need, do it
thats the best advice i can give! if you have anymore questions about being there & helping ur loved one just ask! ill try to answer as many questions as i can!