After my first op, and when I first started walking to school again, my balance was a bit off and weak but that is understandable after having an op on your brain and being in hospital for three weeks. I was walking to school each day with my Mum at first, it was kind of embarrassing cos being a teen, nobody else did such a thing, they would probably think that was uncool but they never had a BI, so there. Anyway, balance got better and I was walking on my own to school then BAM! I was hit with my next op. Back to square one and back to weak legs. More aid until strong enough again. Then BAM! I am hit with my next op. This time, radiotherapy. After weeks and weeks my balance started getting worse and it took two people to hold me upright. Doctors said because of the radiotherapy, my second tumour/cyst was throbbing because there was some sort of liquid inside the cyst, according to Magnetic Resonance Imagery scans. Because of this throbbing, this was putting pressure on my brain, my cerebellum to be exact, the part of the brain that controls balance. Had another op in the end to help the balance, it worked for a few weeks. I spent two weeks in school before having another op. My balance is a lot better than what it was now, I can stand/walk on my own. My legs are a lot stronger than what they were but my balance isn't perfect. I mentioned before about doing a little voluntary with my local Headway group, I make drinks but somebody else dishes the drinks out for me. I could not do that myself. If I were to describe my balance or lack of it, it feels to me like a glass of water in my head. If I am walking, the water would be wavering from side to side and could end up splashing overboard, then my body would sway off or I might lean to one side and almost fall over.

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    "When at college once I was learning the anatomy of the human BODY. I found that the CERABELLUM was at the back of the brain, not the front. My friend had a CYST that they had removed via RADIOTHERAPY. Every day their parents would come WALKING through the corridors to see there son. The cyst that was operated on was against there BRAIN and the parents did not know this, they thought it was against the spleen. The parents were shown MRI scans of the cyst before and after radiotherapy. They were asked what MRI stood for but they could only remember the IMAGERY part. The husband said "Does the M stand for MAGNETIC, by any chance?" It turned out he was correct and the doctors told them that MRI scans are generally used on the HEAD, it is used for other areas of the body too but this particular scan was of the head. I don't quite know what the first part was about where I was learning the anatomy of the human body, that didn't really have much to do with the story. Anyway, The end".

  • have you had any physo to help your balance?

    i had a few months of physo, which had a amazing effect, i went from a slow walking, rather zombie shuffle, who found buses etc quite difficult. to someone who can walk at their old speed 4mph vs 1mph etc.

    I still get vertigo if i really abuse myself, such as put up christmas decorations up high. And i still get caught out now and then, and its not what it was but its not a issue any more.

    when your walking are you swaying or does it feel like it is? or both?

  • I have had a bit of physio in the past but that has stopped now and I do a small amount of the exercises at home. The physio has helped me though, I used to walk slower but can walk much faster now. The only thing is, the balance can just choose to sway off which is why I describe it as waves. I have days where my leg muscles migh feel quite strong and days where my muscles feel like jelly. I could walk along fine and suddenly lose balance and sway off. I can't really stand still at all. If I stand in one spot, I do slightly move like when a tall building moves back and fourth. If I am walking straight, I could sway to the left or sway to the right depending on the terrain. Sometimes I go out for a walk to strengthen my legs and my muscles in my legs might feel really tight. I would have stop and rest, wait a few minutes the. Carry on walking and I feel that the muscles have loosened.

  • Standing still, takes constant ajustments, stand in shorts etc, by a mirror and you can often see the legs making minor ajustments. I'm a fit guy but most days my legs would ake, from having to constanantly ajust, from being well off balance.

    I found travelling on buses/trains/cars etc fairly hard work. oddly the bike was fine from the get go, even if i took it very very easy at first.

  • I mostly travel by buses or car or sometimes taxi if I am not walking. Trains if I go to London. With buses, I normally sue them with my Mum. She lets me get on first because if I get on last, the driver would likely start driving before I get to sit down and could go flying down the aisle haha. I now have a card that I can show to the driver to tell them to wait that I got from Headway, haven't used it yet. I am good in cars and taxis and pretty good on the Tube as well.

  • How do you get on with esculators? they used to scare the life out of me, as I was up high on a moving platform so used to death grip the bar!

    still don't like being touched/held as i can't work out the movement easly ie my Balance is impared but I've learnt to compancate it well, mainly with vision, and i've learnt/been taught by the physo, it's mostly but not wholy autmatic now, though i did have a wee wobble on some covered decking, where i couldn't work out the surface by vision so did lerch about a bit! but it's miles better.

    i had various exerises mainly ones with my eyes closed so it took out the imput I was favouring so I could relearn with touch and vestibular, to balance.

    Balance is vestibular inner ear etc, Vision, and proprioceptive input touch, how far you've streached etc. should be a cordinated system, mine is not any more but it's good enough now.

    the first thing the nero rehab physo's did was work out what wasn't working, took them a while though, i assume they did this with you?

  • With escalators, I'm not too bad with. Usually I'm with my Mum or Dad when I use them and I think they think I have/would have trouble on them on my own. Mostly my Mum would think that but I think she might worry a bit too much there :). If I am going up an escalator then she might get on after me, just in case I fall I think but I never have done. And if I go down, she gets on before me. I do have to watch my footing though cos I could step on the line between each step when the steps go up I could have my toes on one and heel on thin air or similar idea if I go down.

    Mentioning footing can be a bit of a problem, especially with steps on the outside of the front door to a shop. I have gone into a shop, then come out and not realised the step as I probably couldn't see the edge of the step and thinking it was a flat floor so as I go to step out I have made a big step and thud on the floor. I went into a charity shop in Limington and the shop is on a hill. I forgot the step as I went in and when I came out I spraine, or almost sprained my ankle. Thankfully though now, a lot of shops have il luminous yellow strips on the edge of steps which is of great help.

    Some of the exercises I had to do were quite interesting,,the physio I had hadn't ever had to help me out with balance related issues before but one of them was based on what I told her which was it was hard to control balance on uneven surfaces. So an exercise was to put balls on the floor in random order and cover them with a mat and I would have to walk across it. Another was to jump on a small trampoline. I would have to hold onto the physio to do that though as I could have gone flying off in any direction. I had to do my physio while I was going to college as well, so I was able to use there sports hall for my exercises. One of them was skipping which was interesting cos I forgot how to skip at the time :).

  • I wasn't up to trampoline, or balls under mat etc, at least at the start, did have a computer, with a pad that could display where your weight was ie toes/heal, left right etc. that was quite fun.

    a fair amount of standing on one leg, since my left leg or rather the part of my brain that controls it, took damage, ie the work was to force my brain to relearn rather than compistaning with my right leg etc, which is why I had a fine Zombie walk for quite a while, I even got some Zombie t-shirts...

    I suspect since they found my left leg couldn't keep time/sequence well that skipping might not work so well even now!

  • I went on an escalator last week, first time since BI. What a shock, I was totally disorientated, felt sick and dizzy. Felt like I had been on a fair ground ride - it was awful!

    I also felt the same when I was walking across a bridge, sort of fly over, could see the traffic moving below. I had to stop and look away from the edge to ground myself and then walk staring at my feet!

    It's so hard to explain to others though, that is what I appreciate so much about this site - others do get it, they do know what you mean and how you feel.

  • I concidered myself very lucky for not getting these dizzy, nauseous feelings when I am up high or use an escalator.

    That is definitely not to say that I am different from most people on here but my BI has affected me in a different way.

    I always said when I was younger after BI that when I get older, life with a BI will get a little harder for me.

    And I can start to see that now, it is harder than what it was.

  • I walk every day in an effort to re-master the art of walking in a straight line but, three years on I still have difficulty, and I honestly fear that I must appear drunk most of the time. I have an occasional good day but, mostly, I have to concentrate really hard to avoid staggering.

    We have some lovely canal walks where I live and, as I can't swim, they've lost some of their appeal since my bi !! :o

  • Even if you can swim in a canel isn't best, I have back in the day as a wee blond boy.

  • The only way you'd get me in a canal is if I fell in LOL

  • it's been a very long time, since I have been a small blond boy, getting more salt/pepper slowly though...

  • Me too :-D iforget

  • I'm like you Cat...I cannot walk in a straight line to save my life.

    I start out okay for the first few paces but then I gravitate to one side and anyone walking with me gets pushed hedges or off kerbs. I don't realise I am doing it half the time.

    It used to drive my husband crazy until he realised what was going as long as my meandering route will not put me in danger, he moves around me... but he had to learn to tell me he was switching because it made me really dizzy when he kept popping up on one side and the the other...and of course I had no idea why he was doing that and it used to make me cross.

    On the rare occasions I go out on my own I try to walk alongside the inside of the pavement using fences/walls as my guide. If I don't do this I can veer into the road.

    I can swim but since my BI I don't like going near river banks/lake edges or over makes me really dizzy.

  • Your balance sounds very similar to mine, I forget. When I am walking with my Mum, I let her walk in front mostly cos I meant up walking into her. I did something similar when I was at college, I was walking side by side with somebody and booted them in the shin by mistake haha. They said it was there fault but I felt guilty though. I prefer to walk on the inside of a path and prefer not to walk on the outside next to the road otherwise I could end up in it. I don't like it when somebody is walking toward me, especially a lady with a pram where I haven't got much room. I might slow down or stop and let them pass if that happens.

  • Me too. When I was out with my daughter last week, she put me on the inside away from the road as I was teetering on and off the kerb. Talk about role reversal, when she was young I always walked her on the inside! :)

  • Concentration is what I do a lot of when I am walking and I get hot pretty easily. The local Headway outreach is just over a mile from where I live and I can walk it but I wouldn't say it was with ease the early days, I used to walk there and would enter all hot and sweaty. Thankfully now my Dad drives me over there.

  • Funny you have mentioned concentration Matt. Last week I was trying to explain how much I have to concentrate when walking, especially on rough or uneven ground. I have to look at my feet the whole time, I hate it and long to be able to go for a walk and enjoy the view like I used to.

  • I was talking about it on Friday morning with a friend at my local Headway group. Someone mentioned how postmen or women where the shorts in cold weather and my friend was saying it was because of their job, they walk around a lot. I can understand it because like I said, I concentrate a lot more when I am walking, especially when outside.. There is a guy I know who has worse balance than I and he is very slow at walking. You can see the concentration on his face when he is walking. People don't seem to understand the amount of concentration it takes for people to walk, especially if that person has a BI and poor balance.

    As I have said before, I have never had a payed job before and I volunteer at my Headway group, so that is my job and the benefits I get is my pay. Having a BI is a lot of work and a lot of people do not take that into account, especially the government.

  • My cerebellum was injured, so my balance is affected. I have progressed to being able to walk, but I must say that sometimes it's as if I've drunk a bottle of wine. When I stand and walk, everything moves a little all the time, but when I'm sitting, it's fine. I had tests done the other week for vertigo, BPPV, but as told it's not that, so I am now being put onto a person for vision problems, cos they say I have a 'lazy' eye. If it's that, then hopefully, because it's a muscle, I can work it accordingly. I hope it gets better over time.!

  • I hope your eye gets better over time as well, Nutkin. Time is a great healer as the saying goes and it is true. My right eye has permanently turned inward and I cannot move the eye very far from its position. I was told by docs in 96 that I could have an op to correct the eye but it could cause more complications. I know somebody at my local Headway whose eye did the same thing as mine and they had an op to correct it only the op did not correct it, it made it worse. His eye has turned the other direction and is stuck outward and is also blind in that eye now. I was talking to the docs about my eye not too long ago and told them this story and I say I would rather wait it out and hopefully it will get better. I sometimes do exercises on the eye to strengthen the muscles, hopefully that helps too.

  • Thank you Matt!

  • No problem, Nutkin :).

  • Hello all

    I also have a lot of balance issues I think a lot of it is poor proprioception but there's definately aural and visual components too also left sided weakness and altered sensation

    I am learning albeit painfully slowly and sometimes actually through harm that I need to slow down and take my time

    It makes me realise that I rarely walked anywhere LOL always stuff to do people to see I don't like this slow paced or halted pace it just doesn't suit me :)

    I can't walk in a straight line either and I'm constantly bumping into things and people

    I also can't multitask whilst walking out in public what I mean is because of all the external stimuli of people walking towards me at varying speeds which I can't judge

    Also noise etc I can't for instance talk whilst walking otherwise my brain shuts down and I collapse or fall or develop a kind of ministry of funny walks type gait

    My entire left side feels like a twin to the right - similar but different !


  • I can talk while walking but I try not to do it so much because A) I am concentrating on my balance and 2) I don't like talking when other people are walking by, I don't exactly want them ear'oleing in to what I am saying :). So I might talk slower when walking, much slower if it is busy. When I had physio, over ten years ago now, that was when I was first told about having a wider gait, and not a garden gate either :). My balance gets worse when my feet come closer together. So I might walk a bit like a penguin or like a bow-legged cowboy haha :).

  • Ironically part of my job prior to my BI was gait assessments

    A lot of people walk with their feet slightly too close together this narrows your base and therefore makes you more prone to topple/fall over

    It can also cause you to trip yourself over

    Another tip with stairs if anyone struggles with them is to step one foot to meet the other foot instead of stepping past

    With my dementia patients id say take mr foot to meet Mrs foot and vice versa

    And always lead with your good foot / leg going up and bad leg going down

    The saying was good foot to heaven bad foot to hell

  • Ah, gait assessments. In other words you assessed people's gaits :).

    Mr. Foot to Mrs. Foot, that reminds me of a guy called Mr. Ian Foot From the TV show 'Come Fly With Me', but that is another story haha.

    So this Mr. Foot/Mrs. Foot thing sounds a bit like walking down the aisle at a wedding, except you go up or down the stairs :).

  • Yes I did indeed along with stairs and hot drinks

    Also washing and dressing assessments which I found so awkward to begin with

    It was like hi mr/mrs such and such my name is Emma and I am part of the hospitals therapy team

    Do you mind if I see how you wash and dress?

    Imagine that

    After several attempts it becomes second nature and not only do rude parts have the same impact as an elbow or a nose (boring) but you find ways of fielding the question and ways around things

  • I am doing that at the moment with the boot and crutches.. requires so much concentration its exhausting and I find after a few yards outside I feel physically sick.... but I gotta move so move I do ;)

  • Well done iforget I feel for you having to cope with that on top of your BI :)

  • Hi guys

    I must Ditto you all with the balance. Concentration, walking n talking, looking down when stumbling along etc. When walking alone I tend to walk very fast n with other talking, hold on to them for dear life. It's just easier. Gait getting bigger wit age n balance worsening, unfortunately. Currently trying walking aids to see what may suit, in desperation.

    The poor physio!


  • Do any of you do Tai chi exercises?

    Reason I ask is that it is good for balance.

    I have done a little of it myself and I feel it does help.

    The reason I don't keep up with the exercises is because I have something called a BI so fatigue would get in the way or I might forget about doing them or I might be doing something else at the time.

  • my mother does them, though she has no BI etc.

    she did recommend them but in the end for myself the Physo was so dramatically successful way beyond what I/my wife expected.

    My fatigue is only brain related, ie loud parties etc do me in, last work party took me 2 and a half days to recover.

    but my body has recovered to be where it was before, more than capable of long MTB rides or say riding London to brighton to London, should I wish to again.

    which means when I see the GP I get mildly school marm "ooh well done" since my Blood pressure and heart rate are low, though intrestingly the heartrate didn't change remained at 50-60 even in the first few months when i wasn't feeling that well, and struggled with mild hills etc.

  • My balance improved dramatically in firrst six months.From hobbling with partner at one side,stick at other,then alone with stick to freedom!Really wide gait at first(looked like I had kacked myself!) but quite close now.Still careful carrying weight(buckets of water at work etc)as it can throw you.Uneven ground takes more concentration but I still love walking -did miles in early recovery with my dogs.Have to slow and widen for slopes and steps(spasticity),take a torch at night(need vision to balance).Still take my fold up stick to park-been known to pull tendons on slopes but speed and balance much improved-only occassional wobble.Still pigeon toed but no use foecing legs straight as causes unbalance and jerkiness-and right foot can drop.Banana legs are the best way!

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