Stories of Balance and Dizziness after Brain Injury
The following are stories of real life survivors of brain injury. Clicking on the titles will take you to their actual story.
Chris lost almost all of the memory of her sophomore year in high school, both before and after the January accident. Her physical injuries include noticeable left sided problems, particularly her left arm. She has balance problems, can’t run nor stand on one foot safely.
What physical problems were you having during this period?: “Just constantly tired. I’m very dizzy. I have ringing in the ears. The shunt line headache, the occipital headache. Vision is getting, my up-close vision is very dizzy and objects coming at me. You know like a, a neurologist will do this and it always surprises me still, but then they go like this. And it tells them, he’s not ready to drive. I can’t take on like, something physically coming at me real fast.” Did you ever have any formal balance testing?: “Only my current neurologist I would say. He’s had me stand up, hold my head up, you know, straight, do it with my hands out and try to walk and I, I can’t even believe, I mean this was only done in April. But I can’t walk toe after toe after toe.” Do you get vertigo?; ‘I call it just dizziness, but yes, there’s moments where my head just goes just totally dizzy.; Is that related to if you stand up too quickly, sitting up from bed, or rolling over in bed?; ‘I don’t think so. I think it just happens. It could be anywhere.’
DJ states; “And, I know for a fact I could not wait tables and be in that environment any more. The noise, the distraction, the stimulation, I just think it would be plus the dizziness. I think I would drop a tray. I would trip.”
As we discussed previously in Part Six, balance, dizziness, vertigo and hearing problems are very common after any TBI, even a mild one. While ENT doctors have some expertise in this area, when the dysfunction has a neurologic cause, a more specialized doctor, such as a neurootologist is likely best. While such doctors are not plentiful, most states will have at least a half a dozen or so to choose from.
Of all of the risk factors that create a greater hazard for the second injury, balance problems, which come secondary to head injury, are perhaps the worst. Elizabeth’s case fits squarely within that category. When asked what her biggest issues were, she said: “The balance issues with the dizziness, and I was able to handle a lot of that really well. It took my neurologist and my family doctor and my husband, and I have to be careful. I know I have to be careful, like using the shower, walking in the wintertime where there’s ice, walking up and down stairs. I know I can’t reach straight up over my head, but I can reach at an angle, and so working with all of that, you know, helped my dizziness and was helping me be able to do normal things. And the second accident after that the dizziness hit more if I’d sit up in bed. You know, you wake up, you sit up and, I mean, if the phone’s ringing or anything you can jump up and run, you know, to answer the phone. I can’t do it.” She got balance therapy after her first injury, consisting of: “What they had me do is with the physical therapist and you know how you lift weights and squatting and standing up straight, and so the things they were helping me learn all over again that really helped me and I was good at it, and so I knew what would make me dizzy and what I should not even try to do, and that’s what helped.
Elisabeth explains different household set ups because of her disabilities; “And the laundry has to be on the first floor. I can’t be, I can’t be running up and down the stairs. Sure I can do it slow but I still have to watch it with my dizziness my, with the plates, when, when they hurt I know I take my time and do the best that I can do.”
Dizziness and Balance. Another common neurological problem after TBI are vestibular disorders, including balance, dizziness and vertigo problems. Fred’s problems in this area are improving as well. Fred explains; “I’m not sure if it’s exactly the same because of vertigo, I can’t remember the definition of it right now, but it’s, it just my balance is not the same and it’s just, it’s one of those things that it is, it is getting better, but that’s just because it’s being, used every day with me walking around and whatnot.”
Helena explains the therapy she got for balance issues; “(The physical therapy was for) my left clavicle and vertebrae high up in my neck. So I was in a collar, and they didn’t do much in terms of neck and back stuff, but I had very poor balance. At first I couldn’t walk and then eventually I could walk very wobbly with a walker.” Though she has been diagnosed with a vestibular disorder, her insurance wouldn’t pay for any vestibular therapy. She explains the insurance rationale, as best she can: “Well I think (because the balance problem) occurs periodically, my insurance wouldn’t pay for any vestibular rehabilitation. (They said the therapy was) not necessary. The therapist that I was with said why don’t you come back when you’re on Medicare, because that may cover, when you turn 65 come back and try it again, because it, it hasn’t really gone away.” Even though you’d had brain surgery and were in ICU for four days, and had severe damage to your brain, they came in and claimed that restoring your balance wasn’t medically necessary? She states; “Well I had the vestibular (problems) that happened probably a year out from my hospitalization and, and then the, my balance got so bad that I went to the doctor and then that’s when I was evaluated. So a year out they wouldn’t pay for that.
When asked “Is the biggest problem with your right side more fatigue than it is lack of coordination?” Ian responds; “Yeah, I would say â€“ well, in that area, it kind of balances between fatigue and coordination. Some things I can do no problem at all, and other things I just find myself basically stumbling over myself. Like say, you walk on a balance beam; most people couldn’t walk on a balance beam. I, I used to be able to do that. Now if I do that, if I don’t look down to see what I’m doing, I’m going over. Well, when you worked with forklifts and in some cases they’re some applications you’re up in the air. You’re on a skinny little thing you have to maneuver across, and let me tell you, you have to balance.” When asked “Is the problem with your balance is because your right side is weaker, or is it because you have problems inside your head?” Ian states; “I would say it’s in my head, basically. I do find myself getting somewhat dizzier than I used to, and maybe a touch of the vertigo part; not real bad like some people have. But I get to a point where I feel like I get real, like I’m spun ” like somebody’s spinning me around and it’s like wait a minute. I could stand on one foot, but for how long I don’t know.”
Kelly talks about how she began to walk and the issues with it: “Very, very dizzy.”
You also mentioned that you have issues with your balance. Are your balance issues related to the left sided weakness or is it an additional impairment?: “It’s related to the left side, my ability issue.” Did you get any therapy for the balance itself?: “Yes.” Tell us about that.: “Well of course the initial balancing training came in Austin on those big red balls and then in Tennessee it came with a balancing board. I had to roll it around my left foot, put my left foot in and make it move. It was basically a rolling lid. It was a big lid that was on, it didn’t balance itself so the PT would tell me to make it move to the left or make it move to the right, invert my foot, evert my foot, something to actually make that lid roll and that’s what I was able to do.” Kelly talks about the issues she has now with dizziness: “Well, I think it has to do with my diet. But here lately it’s got to where when I get up in the morning I’m just so dizzy. I feel like I’ve been drunk and I know that hadn’t happened. And I would just, just rebalance my entire being and it tends to substantiate that vertigo.”
You’ve had your graduation. Now you get to go out in the real world: “But there’s one problem with going out in the real world. You normally have to have transportation to do that, and I didn’t have transportation. Nobody would let me drive. The doctors, the neurologists had told my mother that I would not be able to drive for quite a while and not, to not let me. I still had a balance issues that I was not to do anything that could, further impair or cause a further injury. My balance, my mobility, things of that nature.” Kelly continues to explain her balance issues in regard to ice skating: ” I put on the skates, I lace â€˜em up, and they’re little bitty thin bars. I don’t know if you’ve ever been on ice skates or not, but they’re little bitty thin rail things you got to walk on, and you get on the ice and you start sliding. Well I truly appreciated my imbalance, my balance impairments at that time. So as soon as I got on the ice, I turned around and walked right back out to the seat, took my skates, and I said I’m not doing this.”
You had physical problems from your injury?; “Yes. Equilibrium you know I couldn’t walk steady, because I had to walk not steady, you know and physical, the, one other thing that changed is the physical part. I think it was the equilibrium was all messed up. That’s causes you to not to walk steady.”
Is it clear that the problem you were having with walking was balance, not that you had lost the use of your legs or your arms?: “Absolutely, yeah. It was my ability to mentally understand walking.” How long did it take you to get to the point that you could regain your balance well enough to begin to walk normally?: “I don’t remember that instance, but I remember when I was first able to jump, and when I was first able to be standing and to put my pants on while I was standing. So I remember that kind of balance. And that was a lot later. I mean I know that I did walk fairly early on. But I didn’t walk well and confidently, confidently, until maybe, I don’t know. Nine months? I don’t know.”
Do you find yourself getting extraordinarily fatigued at work?: “It depends on what I do. If I have to, well depending on
how I do it, when I worked at Best Buy, I used to do a lot of straightening. I can sit. I have a hard time walking and standing. During the fall and winter months there is a lot of times when I use a cane because of my knees. When I go to something to where you have to, an example would be church, where you have to stand and sit, I sit. And it hurts me to stand and I begin to sway because I have no equilibrium.”
Nancy’s mom states; “Her balance was a little questionable yet but she got up and went to the door to answer the door when they came to wish her a happy birthday in hospital.”
Does she have difficulty with coordination, balance, walking because of that tracking issue? : “She has balance issues with anything leaning forward. Like if I ask her to bend over and pick up something off the floor she doesn’t, it takes her a while to want to bend forward or she’ll squat or she’ll pick it up with her feet.” Let’s talk about the balance issues. Has that been specifically diagnosed as secondary to this injury or is that just something you observe? : “Secondary to this injury. Because I discussed it with many physicians and they either figure it’s something that she feels when she’s leaning forward with her brain, that the brain is actually moving or she might be experiencing a slight, uh, like a vertigo or a dizziness.” Has she been tested for vertigo? : “Yes. She had a slight nystagmus situation going on when she got home into therapy so that was like a month and a half later.” Does she have periodic periods where it comes back and she gets these floods of vertigo and balance issues?: “She complains about being dizzy every once in a while. She says, I think I’d better sit down, I’m getting dizzy.” Is that related to the activity that she’s doing or just seems to come out of nowhere? : “Kind of comes out of nowhere. It doesn’t seem to be like a blood pressure issue or –
What do you remember about your therapy?: “I had to learn how to walk again. I was very dizzy. I couldn’t make it from the couch to the bathroom without falling so I had to literally hold on to things and it was, it was tough on me.” Was the problem because your muscles weren’t working properly or because you had no balance?: “I think it was just balance.”
In your physical therapy, the primary focus was on walking?: “Yeah, balance and walking.”
You have balance problems?: “Yes, sir. It’s gotten a lot better since, you know, I walk a lot. I just try to walk because I still have it in my head that I have to get better. I seem like I’m getting better if I keep walking, so I just try not to put myself in a position where it’s like real precarious if I lose my balance and where I’m not going to – I don’t know, to where I don’t have to plot out like the most direct route.”
Did have any balance problems in terms of walking or was it primarily more physical?: “It’s balance.”
How does your body work differently now than it did before you got hurt?: “It don’t. Just that because of my balance issue everything’s a little wobbly, like when I try to bench.” TJ describes his return to biking as just getting on and going. Michelle remembers it a bit different:”He is able to bike. That took a long time. He did not get on a bike and was fine. His balance was, it was several years after coming down. He biked where it was up and down the street for a long period of time. But yeah, he does, he bikes quite well.”
What has been the most work for you?: “The balance issue, the speech issue. That’s basically it.”