I never imagined recovering from a craniectomy surgery would take so long to heal from. There is a fine line between doing too much throughout the day, working my neck and head muscles too much, and being in pain at night, or mentally feeling like I'm not doing enough, but not being in pain at night.
I want to be the "me" I was before so desperately. I know I can't baby my muscles, but trying to sleep at night sometimes is too much; tonight is one of those nights. I still can't lift my grandbabies or hold them standing up for very long. Bending over to pick things up from the floor, I can feel the pull in my neck, and it hurts terribly. Some days, just lifting a gallon of milk out of the fridge or pouring a pot of boiling water in the sink feels like too much pulling.
Nights like tonight, nights that I am in a lot of pain, I cry on Jerome as he rubs my neck or on my head incision where it hurts, it helps a bit, at least enough to calm me. Once he drifts off to sleep, I roll over, prop myself up to almost sitting (it keeps pressure off my head), put my headphones on and turn the heating pad on high, and wait for the pain to go away or finally just give in to much-needed sleep. It feels good to be at least sleeping in the same bed again. After returning home from Duke, after my craniectomy, I slept sitting up in our bed because the pressure and pain of lying down hurt too much. Jerome would make what we jokingly call "my nest", propping pillows all around me, several pillows under my left arm to keep my arm from pulling my neck muscles too much, one pillow under my leg to keep me from unknowingly slide down in my sleep and another under my other arm to keep me from rolling over in my sleep. It really was like a nest he made for me every night. And him, he has slept on an air mattress beside our bed since surgery. Like I said, I am glad we are at least able to sleep in the same bed again. I missed sleeping right beside him throughout all of that healing time.
A few weeks ago, I had a bad fall. It was a day I was finally starting to feel like myself again. I was carrying a basket upstairs, tripped on a toy in the girl's room, and fell very hard with a lot of momentum (I basically went airborne and slid across the floor as I landed from the fall). I ended up on the other side of the room. The ER here did a CT scan with contrast, since it wasn't too long ago I had had a craniectomy. Nothing was broken, thankfully, but I pulled a lot of muscles. When I fell, subconsciously I threw out my right arm, and I felt it pop and burn as I fell. I was alone, upstairs, without my phone. I just lay there and cried; it took all I had in me to get up. My "good" arm was no longer my good arm, and my left arm, I still can't put a lot of pressure on because of the tight neck muscles stitched from surgery. I can't wear a brace because the strap wraps around my neck where the incision/scar/healing muscles are. It felt like I pulled every muscle in my neck, surgery side, and what was my "good" side. I have noticed that when inflammation is up is when my head hurts the worst (not a headache but more of a pain where the tumor was, and it shoots up my head along my incision). It has been like that since the very beginning in October with the anaphylactic reaction to the iron infusion. I know without a doubt it is inflammation that increases the pain. Steroids were the only thing that relieved it. The pain woke me up at 2am the other night. At our post op appointment at Duke, my doctor said what he removed was the size of a cue ball and he had never seen anything like it, ever. He told us it was NOT an osteoma (what the doctor here in WV assumed it was) and what was removed was benign, but that I need to come back yearly to ensure it does not grow back. My occipital nerve was on the outside of this bone tumor, which is why, as it grew and I had any inflammation, it would be so painful. I thought after healing from surgery that I wouldn't feel that pain anymore from inflammation, but I have been. I don't know if the fall had something to do with it or if it's just something I have to live with. I'm kind of at a loss for what to do from here. Do I call my doctor at Duke and possibly have to make another trip there? Or do I just give it more healing time and hope this goes away with time? I know during my week of hospitalization in October, the neurologist did an occipital nerve block (2 on the right side and only 1 on the left side because of the tumor). Trying to navigate all of this is so hard.
I am beyond thankful it is benign. I know circumstances could have been different, and I feel bad for complaining about the pain I'm still feeling now. Leaving Duke that day was an emotional day; I was so relieved and filled with joy inside that I didn't have a future full of chemo and an unknown outcome. But seeing all the others waiting for labs, some in visible pain but smiling through it and putting on that brave face, I felt guilty, guilty that I was able to walk out of there with a benign diagnosis, but oh so VERY MUCH RELIEVED. And now, even though I'm in pain, I feel awful for crying about it or showing it to anyone because I know it could have been much worse. But I'm also at a point in healing that I'm questioning why I still have so much pain when inflammation is up.
Sorry, this is such a long post, it's late, I'm upset, in pain, and just unsure of what to do anymore.
I still have many good days, and I'm doing so much better now than when we first returned home. But I still have hard, painful, long nights after a long day or when inflammation is up. I don't know if the fall just set me back, and I just have more healing to do. To put it simply, I'm tired mentally and physically of the constant pain and frustrated with myself that I am not better yet.
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