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Tori, Carson (11), Abigail (9), Thomas (7), Sarah (5), and John
My name is Tori, and I am a 42-year-old female. I was 41 when I had my ruptured brain aneurysm almost a year ago, on January 22, 2005. I have a wonderfully loving and supportive husband, John, who was with me at the hospital(s) everyday, whether I knew he was there or not. We've been married twenty years. I also have four beautiful children, who are now ages 11, 9, 7, and 5. Before my aneurysm, I was very active. I ran six to eight miles per day. I was (still am) vegetarian, and I homeschooled (still do) my children.
1 January 2006
It's been such a blessing to be able to read some of the narratives posted on this website! It's made me think of questions to ask my husband, like how long I was in surgery, or what my percentage chance of survival was. However, I also seem to have a good cry whenever I read these stories. Maybe that's why I've been reluctant to post my own. I don't know of any other survivors here in Hawaii.
I did have one of those "worse headache of my life." It was a Saturday late afternoon, and we were home after an afternoon of running around to soccer games, etc. I had gotten dinner pretty much ready, and went into the dining room to sit down next to John, who was reading the paper at the time. I had to sit down because I could not stand, and after a little while, and a lot of sweating, I told him to take me to the hospital. Somehow I knew this was serious. He did not want to take me. My father-in-law was visiting us at the time, so he could stay with the four children, and John was able to take me. God had his hand in that situation. I remember we had a disagreement about my shoes. John insisted that I wear them (they were just slip-on Birkenstocks), but I could not get them on! I remember part of the drive to the hospital seemed terribly long, and every little bump was so painful. Other parts seemed very short. That was when I was passed out.
When we got to the hospital, John had to carry me in. He had trouble with the automatic door, I recall. Once in the ER, I was whisked away to have my BP taken, etc., while he was left to do the paperwork. I don't remember too much after that, except at one point I do remember them cutting off my shorts. My blood pressure then was 251/134.
This hospital was fortunate to have a neurosurgeon on staff, and again God's hand was at work, because the neurosurgeon was there at the hospital when I came in! We found out later that he was there for a man who had broken his neck in a surfing accident. I bumped him from his surgery. When he and his wife saw me, they said a little prayer. Not what I would have done had I just been bumped from surgery! The ER staff must have done an awesome job. I was brought in at 6:00. I had a CT scan done, and was in surgery by 8:00 that night.
Apparently the neurosurgeon came out of surgery around 1:00 that next morning. My ruptured aneurysm was in the Charcot-Bouchard artery. The damage was done in the cerebellum part of my brain. The aneurysm cut off blood flow down my spinal cord. They put the drain in the front of my head.
After the surgery, I was in an induced coma for nine days, so I'm told. I'm also told that the doctors brought me out of it everyday for testing. I don't remember that at all. Also, it turns out that I am "narcotic naÃ¯ve," so that any anesthetizing-type drug has major affect on me - much more so than on most people. So, when they would go to wake me up, it would always take four or five times longer than they thought it would take.
I was in ICU for about four weeks. Shortly after the coma, they did surgery to do a tracheotomy, and insert a feeding tube and a PIC line. The first time they tried to do surgery, they had to quit because my blood pressure went so low due to the anesthesia medication. They got it right the second time.
I kept thinking I'd hop right up and do something. Then, as the day wore on, I would get tired of trying, and tell myself I could do it the next day. My arms especially just felt so big and numb, and they wouldn't move. Also, of course I couldn't talk. Therapists would try to devise methods using letter boards, blinking, etc., but nothing ever seemed to work very well. I remember once calling John an "idiot" because he couldn't figure out something I was trying to spell. Much later, after they took out the trach, as I was reliable in breathing, I was able to talk, though not very well, especially at first. Also during this time in ICU I remember having very vivid "dreams." They were about babies and family members, mostly. I missed my children terribly. One day when they visited, I promised them that they could have a puppy. I was delirious, and my husband was dumbfounded. The kids were thrilled. Today they have that "puppy." She is now six months old.
I was then moved to PCU (Progressive Care Unit) for about another two weeks. Here I continued Respiratory Therapy for a while, and started a very simple Physical Therapy, provided I was awake. I was still on a lot of medications that made me drowsy. I also needed extensive Speech Therapy to relearn how to swallow, etc. I still had a feeding tube, but occasionally got thirsty and could handle a couple small spoonfuls of ice. I was still somewhat delusionary, and at one point made John or my mother stay with me overnight so that I would be "safe." It was also during this time that I started throwing up. A good day was only seven or eight times. Usually it was more. This lasted for about three weeks, and no one had an explanation.
After PCU, I was transferred to another hospital, a Rehab hospital, where I spent another month. I received different types of therapy five times each day. For me, this was an exhausting schedule. I still had a feeding tube until the day I left. I ate meals for a week or so at the end. The last time I remember tasting anything was on Easter Day, 2005. I still do not taste, though my sense of smell is terrific!
I must say I had wonderful support from friends and family. My mother came from the mainland (we're on Oahu now) and spent months here helping to run the household while I could not. Friends brought meals for my family for about three months. Other friends helped my mom get around here and figure things out.
After I left the Rehab hospital and came home, I still had out-patient therapy for about two and one half months. There were still so many obstacles to overcome. Nonetheless, it was so wonderful to come home, sleep in my own bed, and, most of all, be with all of my family. This past Christmas, I kept thinking that if God's grace did not allow, I wouldn't be celebrating with them. But there I was. A miracle. I can't thank God enough for that miracle.
Am I a different person now? YES! Am I the same person as before? YES! This is so difficult for anyone to understand, unless they've been through it, too. I have great problems with balance. I do walk unaided, though I walk like I'm drunk. But I'm not! My memory also is not so good. I feel very different inside, and am not able to do the things I once did. I tire very easily. I miss running very much. I must be deliberate now in everything I do. Nothing comes naturally. And I can forget multi-tasking - just can't do more than one thing at once! I have trouble with emotions. It's either all or nothing. I was left with double vision, and wore an eye patch until my first eye surgery at the end of July. I also had eye surgery at the end of November. My eyes are better, but still not like before.
Yet, I am still the same Tori, with the same family and the same loving husband. I still have the same idiosyncrasies. I still am particular about many things, and I am still a "neat freak." One more thing that's different, though, is that I love God more than ever. It used to sound so trite to say you were just happy to be alive, but now it's so true!
Update: 23 January 2007
Yesterday (Monday, January 22) was my 2nd "anniversary," so I am quite due for an update. This anniversary meant more to me than the first, I think because back then I was still in denial.
This morning I was lamenting some limitation or another, and I got to thinking that if I made two lists - one list of my limitations, and a second list of my accomplishments, that the second list would be longer. Some of those "accomplishments" are so basic, yet really should be on the list. This includes things like talking (had to be relearned after my trach came out), walking (that came much later, in stages), and even breathing on my own (I was on a respirator for a while).
So, with this perspective, my limitations seem miniscule. If only they could always seem miniscule! Enumerating them here might just be too depressing. There are things that I am just going to need to live with for the rest of my life, and there are other things which I can improve.
For example, this past summer I went to another rehab, this one being specialized for balance (Vestibular Rehab). After a couple months, the therapist discharged me, saying that he taught my body all that he could, but he couldn't teach my body to talk to my brain. He believed that some of my symptoms were permanent, but maybe if I worked on strength, then some balancing actions could improve. Well, that gave me the impetus to try running again. Before my ruptured aneurysm, I used to run a lot, and far, and fast. So now I'm running again! Admittedly, I am not nearly as fast nor can I run nearly as far as before, but I can go. This is not only a strength/endurance accomplishment, but a balance one as well. Not long ago, I ran in a 5K race, which is 3.1 miles. And I was not the last finisher! So, yes, I still frequently run into doorframes and I could never pass a sobriety test (i.e. walk in a straight line), but now I do not get nearly as exhausted during the day, and I feel better about being able to do something.
I can say that God has certainly confronted us with the unexpected, but He has given us the means to overcome, at least as much as is necessary.
Update: 26 April 2009
I was planning for a 4-year update, but that didn't happen. So, this is a 4 -year update (about). I usually think that whatever "recovery" is going to happen, has already happened, but then I am reminded that progress can still be made. Nerve fibers can actually still grow, albeit at a very slow rate. So, while I haven't had any monumental moments in terms of progress in the last couple years, I know progress has been made over the long run. People who haven't seen me for several months will remark that they notice improvement in speech or in walking or whatever. I'm forever working on my speech.
I need to often remind myself of all the things I can do. I also rejoice in being able to watch my kids grow and learn and do so many things (they are active!).
It is frustrating to me at times to no longer be able to grasp things quickly, or to just be on top of it all. To most new acquaintances, I probably seem mostly average (with a few quirks, maybe). However, for someone who routinely "broke the curve" in college, to me I seem a long way from where I used to be.
Looking back at my previous update, I would say I still have the same limitations. I make so many stupid mistakes, forget so many things (it's more than just age), and can't do so many things (due to energy or balance, usually). Maybe I'm just more used to dealing with them now? Part of it, according to my husband, is that I'm taking on more than I used to. That is a good thing. I still enjoy running, and rejoice in my ability to do so. Probably I even go a respectable pace now! I know I am blessed just to be here with the ones I love.
Update: 29 January 2010
5 years! I must have turned a corner somewhere after the first couple years. An "anniversary," or, as I like to call it, a "birthday," used to make me so emotional. It would be a rough day. Now, the occasion of my 5-year "birthday" - Jan. 22 - was instead a joyous, praise-filled day! I am so grateful!
Mostly I've just been learning to live as completely as I can with my less-than-complete brain. This "learning" is both conscious and subconscious, as the body also does so well at compensating, as most of the family knows. One new thing that has recently happened - I found a couple gray hairs! I know, most women would not be too ecstatic about this, but I am. See, I was getting quite the gray roots before my ruptured aneurysm, and afterwards - nothing. I guess my body had other things to do? Well, now my body seems to think it can get with the program.
I feel like one of my greatest physical accomplishments has been running. First, it's been an accomplishment for my body to have enough "extra" energy to do so. A few years ago, I couldn't even tell a difference between a day when I went for a run and one when I didn't. Just walking, etc., made me just as tired as running. Now I am past that, but I'm still not very fast at running! Second, running is an exercise in balance, since a person is on one foot for much of the time. Balance is one thing that got zapped. My body had improved here though, too. Part of that is by doing little exercises to take long strides (like jumping over the railroad tracks). Those little things seem silly sometimes, but I guess my point is: improvement is a continual thing, and we need to keep working at it! That's like most things, I'd say.
Yes, there are still many "residual effects." This past year I had ear surgery (again). So, I'm on my 3rd ear drum in my left ear. I don't think I need another one! They think I got an infection when I was in a coma, and that started much of this. My eyes, after two eye surgerys, are not perfect, but I think they're as good as they're going to get. It's mostly just the "fast movements" that are not so fast anymore, and the peripheral vision that is not so peripheral anymore. That, along with my impaired reaction time, makes me unwilling to drive on freeways where I might not be able to quickly see/assess those around me. My sense of taste has not come back, though I've learned that maybe I have partial taste (like some salt, and sour), and again, my body has learned to compensate.
Mostly I really am just so grateful! First, I am grateful to the ONE who holds me in His hands, especially 5 years ago, and still today. Second, I am also grateful to my husband, who not only stuck with me, but gave so much, really put out for me, and understood and turned to God. He still does. All of my extended family has been SO supportive, as have special friends.
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