Category: TBI Survivor's Stories Written by Survivor
Summary - the cause - the injury - today's quality of life?
8/25/09 I had an excision of a 10cm frontal lobe menigioma. I had progressive symptons leading up to the recognition that finally I totally decompensated and within 4 days had open brain surgery. I regained immediately most of my right side movement, but was left with expressive aphasia,
highly emotional, almost all of the things that have do with the left frontal lobe. I am glad to be alive, but my family life is rapidly deteriorating. I can tell that I have had a personality change, say inappropriate words, can't think of words, etc. No interest in sex or anything else.I am angry at all the doctors who didn't believe the symptoms I was experiencing, and my husband who did not believe me. I have a Masters in Nursing and planned on becoming VP of nursing at a large hospital, now I can't even finish my ceu's to renew my nursing license, let alone hold down a nursing job or enter a phd program
Please share your experience at the time you became aware of the injury?
My injury was difficult to dx because I was (am) attending a pain mgmt clinic and my family contributed my fatigue, lack of interest, inability to think or talk to the narcotics I was taking for severe osteoarthritis, fibromyalgia. For a whole layer I slept, tried to participate in activities, buy my right side was getting weaker and weaker, falling down constantly. I couldn't walk, talk, sleep, was incontinent, had frequent headaches. My husband, who didn't believe me at all (attributing it all to the morphine I was taking) came home on 8/21/2009 at lunch time and I was cutting of my wet underwear. He asked me what I was doing, and I couldn't answer, so he took action....on the 25th after 4 mri's had the menigioma removed in a 10 hr surgery.
Tell about the experience immediately after the injury. Surgery? Coma?
I had surgery to remove the lg. menigioma, went to the icu for two days, was directly dc'd to the acute neuro rehab. stay for 12 days. Had 8 months of speech, physical, ot, and social counseling.
Tell us about the hospital stay after the survivor was no longer in a com
Tell us about the time in rehabilitation?
I liked that was acknowledged something had been really wrong. It was grueling schedule, up at 7am, back to bed at 8pm. I appreciated the routine, but was frustrated. I had no idea that I would be left with expressive aphasia.....which has improved somewhat. The other thing that bothered me was i had to call someone when I had to get up. I just got, or I would have wet the bed. All in all, the staff was awesome. I just remember one time when I got really belligerent when they wanted to give me a shower and my husband just put me in the shower chair and washed me from head to toe. I realized I was angry, but I wasn't sure why. All in all I received excellent care from all of the staff.
Tell us about coming home!
The drive home was awful, it was very fatiguing. My family (I don't remember much over the past 2 years). I started home therapy after about being home 2 weeks. That was awesome, I had a reason to get up, get organized, and function normally. I was disappointed that I couldn't drive (it was 8 months until I could drive!!) I was lucky too have that 4 months of rehab at home, then they left and I was on my own to finish the last 4 months at an outpatient facility. I didn't keep up the physical routine without my pt buddy or do the speech program like i had intended to do.
"Please type some single words that describe how TBI has touched your life. For example: Frightened, confused, sad, etc. Enter as many or as few words as you like. Separate each word with a comma"
depressed, angry at the world, sad, glad that I am alive, increased my reliance on God to get me through each day, frightened about what the future will bring.
Tell us about life today?
I try to particate in as many activities as I can. I experience brain and physical fatigue after about 2 hrs. I attend church as much as I can. I try to help my daughters. I am 56 and have an 11 year old at home, 2 others on their own. Everyone thinks I should be better. I have had a distinct personality change, that scares me. I blurt out what I am thinking, good or bad. My husband and I are not doing well, we argue almost constantly, which is draining and having a negative effect on our 11 year old. I am so thankful she is smart and wise above her years. I keep trying to do my continuing education to regain my nursing license. I am searching for a support group for TBI. I also have developed hypothyroidism and type 2 DM. I need some kind of direction, I feel like I am just existing, the tumor took away my life (which was already compromised due to me severe arthritis and fibromyalgia)
What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?
I can't remember much of the past 2 years, but I did keep the binder and all the info that was given to me. I am just starting to review it. Develop and/or use good support system. Accept offers of help.