Hey Allison,
You’re doing OK. You’re seeking information for her and that’s a good thing.
No one ever does, not even the Dr’s. They can tell you what the ‘textbook’ says but the reality is far more shocking. Many years ago I had a compound fracture of my leg, with the bone poking out of the skin. The pain was intense. Due to this when the surgeon asked me about pain I said I knew what bad pain was. Then he operated… …OMG… …PAIN that would kill a horse. My broken leg pain paled into insignificance. I did not believe THAT sort of pain existed. The surgeon spoke about headaches, but this wasn’t a headache these were bolts of agony sent from the gates of hell exploding from my eyeballs. With my leg pain it affected my leg, my head pain, it affected EVERYTHING.
Then you’ve come to the right place. Our information doesn’t come from a book, it comes from our own personal experiences. All of our journeys are different, I’m yet to hear of 2 being exactly the same. Some of my experiences maybe relatable, some of our other member’s experiences will also be very relatable. The medicos will often give us a best-case scenario (Unaffected) and a worst case scenario (Death), well, they were the best/worst I was given, 90% of us fall in between those 2. But they don’t often give a lot of information about the recovery side of things. Some people can come out the other side wondering what all the fuss was about, but for some there can be lingering issues.
The body uses sleep to recharge and recover. A sleeping patient is a comfortable patient. If she can sleep, that’s not a bad thing at all. Yes, she needs movement, but within her limits. 10days out, my bed was my residence. I’d get up, but in my bed, in a dark, silent room, no stimuli I could rest. I needed rest.
Hey Allison! It sounds to me as you are doing everything right, good job! Sleeping a lot 11 days post surgery isn’t a bad thing… you’ve both been through a lot. Make sure she stays properly hydrated and is eating protein, it helps the brain to heal - you can ask the Neurosurgeon or the PCP or an RDN if you know one for the amount of each. I ruptured and there was a lot of blood in my CSF. It’s not supposed to have a mix, I’ve never read or known anyone who can tell me exactly how long it takes to clean itself out, I’m guessing it depends upon the ratio of contamination.
One thing I learned from an extended stay in NSICU and from members here is that keeping our heads at about a 30 degree angle is good. Some members have those beds that can give them the angle, others use a wedge. It may help as it actually can help reduce fluid build up. There’s a plethora of information on the internet about gravity, our brains and how our hearts work.
Thank you again Merl. All this helps. She seems to be waking in the morning with headaches that will go away after she takes her tylenol and migraine med(sumatriptan). Today is the third day of that. She is taking only tylenol for pain…her choice as the other prescription pain meds like oxi made her nauseas. The visiting nurse came yesterday and said she is doing well. SHe is getting PT as well, it just hasn’t started yet. I’m saying yes to all the help we can get from our medical!!!
Hello Moltroub. I am trying…thank you! The hydration part is a struggle with her but we are doing it. I make her drink every half to an hour as much as she can. She is eating a lot of peanut butter. She asks for it either in a sandwich or on crackers. Lots of chicken soup, lasagna with meat, escarole and bean soup, were all made by our friends and she is eating that. I know to watch the sodium too. Her CSF seems to be slowly dissipating. I am making sure she is at an angle while sleeping but sometimes she ends up less than a 30 degree while she sleeps at night due to her moving. I should buy the wedge for her. Thank you for all the help.
You really are doing very well. I have to use a supplement protein drink or my brain goes wonky. My current favorite is FairLife, comes in a plastic instead of cardboard container. I know I can get it shaken well in the plastic, not so much in the cardboard that Premier comes in and I first used. I’m pretty easy, BH just gets me chocolate flavor if I run out
Thank you Karen I love the support group too it surely does help my saying is One Day at a Time Sweet Jesus I have an MRI scheduled next Tuesday let’s see what that shows all I know is my head is caving in I have a small holes on the side of my head and the pressure is bad and my equilibrium is off I will keep in touch after the MRI and let everyone know what it shows thank you again!