TBI. Symptoms regarding walking Differently

[superstar79]

Has anyone else had an unusual gait after a TBI? It’s been almost 13 years now since I was mugged and attacked, which caused bleeding and swelling on my brain.

I have limbs that are weak and shake randomly having been through countless physio sessions the strength never returned properly. When I walk my head bobs from side to side and my legs mostly go in any direction other than where I want them to go!

Walking is exhausting and painful along with extremely slow. However I am constantly pushing myself and will never give up!

There’s been no way to correct this way of walking, has anyone else had exactly this with the head bobbing? If so did they manage to fix it? Any walking changes after a TBI would be interesting to know.

[Chat2U]

Hi Superstar!

I'm following this post for ideas - my right leg is constantly giving way!

Some advice I was given recently was to do exercise that strengthens without being weight bearing, eg floor exercises or swimming.

What sort of thing have you tried so far?

Ax

[superstar79 in reply to Chat2U]

Hi. I have tried using the physio bands and sitting down exercises. They are no go for me as my arms shake like my legs. With my legs the more that I try to force myself to raise them the worse the shaking gets! Swimming is something that I used to love but my head can not take the noise, crowds and lights. It’s not fear or anxiety it is physical pain stabbing through my brain. I have tried many times to push through the pain but it’s no good. I have a high pain threshold but my entire body is in pain 24/7 now. That’s with other conditions along with TBI.

[superstar79 in reply to Chat2U]

My legs give way most days. I think walk forwards and my brain must interpret that as…bang into the nearest thing! 🙄🙈

[Chat2U in reply to superstar79]

That must drive you nuts! Mine go the right way they just sometimes forget to stand! I find if I hit my leg a few times it sort of rewires the link and kicks back in!

Have they identified if yours is purely neurological? We're going through that with mine at the mo. Nerve conduction study identified lack of nerve function in one part of the leg but they don't think that accounts for the pain or struggle walking or the falling. I'm due to have lower back MRI again soon to check no further damage, then next step will be the dreaded neck MRI. My worst fear of my C2 becoming unstable as this means paralysis- or death - but it's the paralysis that terrifies me.

My neurologist seems to think that most of the issues are the result of the brain injury rather than neck/ back injuries because I find it so much harder to walk and balance when tired. He explained it as the body always compensating for the deficits left by the injuries, and when it gets too tired it pulls it's efforts from the peripheral stuff and concentrates it's energy on keeping the main systems functioning. Plus migraine aura. Joys.

What tests have you had do far to eliminate/ confirm, and what support have you been given?

Ax

[cat3]

Hi Superstar. My odd gait was noticeable as soon as I started walking again (after a SAH). It's 10years on for me and still difficult.

I don't have the head bobbing you describe but my balance is poor, and walking in a straight line along a pavement takes all my concentration. As you said - it's exhausting.

Coincidentally ? (or maybe not) I developed Plantar Fasciitis after the haemorrhage, so painful feet is an added challenge to supermarket visits. But I'm bloody minded and insist on walking for the exercise rather than taking the car.

Exercises haven't improved my gait and doctors say 'It is what it is' and I must adapt. I guess like you (& Chat2U) I'm still looking out for suggestions..... 🥴 Cat x

[superstar79 in reply to cat3]

My legs have a mind of their own! 🙄😁 Acceptance for me is not going to work as I am determined to beat this one way or another…..🤔 possibly a new pair of legs, arms, brain and might as well chuck a boob job in while I’m at it! 😂

[cat3 in reply to superstar79]

😁 x

[Chat2U in reply to superstar79]

Brilliant! I'll get recovery plan when it's on offer! 😄

[superstar79 in reply to Chat2U]

There are answers out there somewhere. All I need is to be a millionaire to find them! 😂 The thought of techno-bod would suit me just fine! 😁

[Trevor78 in reply to cat3]

"but my balance is poor, and walking in a straight line along a pavement takes all my concentration. As you said - it's exhausting." - That sure rings a bell. A combination of dodgy balance, left side weakness & sensory issues can, for me, make walking in a straight line anything from not too bad to extremely unpleasant, with the average possibly somewhere in-between. It certainly can be very exhausting though.

[superstar79 in reply to Trevor78]

Hi. Thank you for your reply to my post. It’s always difficult to try and control my body. Everyday I am banging into things and my arms and legs are constantly covered in bruises. This is within my home or outside, although having my walking stick does give me some added protection, as it were outside I need to concentrate on my walking and look at the floor mostly. I have many symptoms with my TBI that are annoying to me! I am currently going through tests with a stroke consultant because they think that I have been having mini strokes also. My MRIS are showing more changes and they are trying to find out why. I have been an NHS Guinea pig for many years and they sadly have no magic cure for me still. So, I will continue pushing myself daily to try and beat this! Giving up is not in my nature and although I am told by every consultant that I see that my disabilities are permanent, I can not fully accept this!

[Trevor78 in reply to superstar79]

That last bit sort of sums it up really. Chances are that we are left with permanent disabilities & how we deal with that situation going forward is the real challenge. I'm sitting here after 40 years still fighting and wondering how I got here and what if? It's not been great way to deal with it and it hasn't left me in a great place now in several aspects but it is what it is. Good luck with your situation which looks tough. I hope that you get the answers & improvement that you require.

[superstar79 in reply to Trevor78]

Thank you!

[Hidden]

Hi I've lived with footdrop for 37 years after my BI I've never had it looked at until I showed doc last week. My lower leg and foot drop stopped all my sports by time I was 15 and not done any sport since my toes drag across the floor if I dont walk with either rocking onto my right leg to give extra lift or a high gait I will trip and fall both methods of trying to combat my foot drop cause my foot to slap the floor. I've tried to hide and fix this problem all my life but I've never been able to. I hid it so well no1 knew anything about my head and leg/foot problems until recently as I cant hide it anymore it hurts these days. I can trip over anything worst one for me is falling up stairs/steps or turning my foot to turn to my left. I fall all the time I've always had this problem since after my accident in 1983.Footdrop stops me leaving my house on my own due to fear if falling I've never had any treatment for it and only now via this forum I'm sharing my story. Good luck and best wishes to you on your journey 💪💪👍

[superstar79 in reply to Hidden]

I hope that you can get the medical treatment you need now that your GP is aware of it. Good Luck

[Chat2U in reply to Hidden]

That sounds really rough going. I know about having to drag your leg and swing it up, but know nothing about foot drop. Definitely get to the GP. You never know how they may be able to help. Even a small change can make a huge difference if it allows you out of the house.

Have you tried walking sticks for stability? If not you can pick them up for about £6 each at Decathlon.

[textile163]

During the first year after my brain bleed my walking deteriorated seriously. I had been in a ‘specialist neurocare’ facility where the physios etc were useless. I went there for intensive rehab but instead I had intensive bed rest. As a result I got myself transferred to Wessex neuro who were fantastic. I was diagnosed with hydrocephalus which happens in 60per vent of cases. They fitted a shunt and all my unpleasant symptoms went immediately. Basically they gave me my life back. My movement now is not very fluid after all that bed rest and I am doing aquarobics to try to address this. Ask the question about hydrocephalus. It is easy enough to diagnose. Good luck

[superstar79 in reply to textile163]

Hi. Thank you for replying. I have seen so many neurologist and other medical professionals. Personally I think they are secretly testing all the medications they can think of on me! 🙈😁 I have been referred to AV specialist now following my latest MRI They are going to discuss my case in an MDT meeting. Which has been requested by my GP who has been an amazing support to me throughout the years!

Maybe one day there will be a cure for me so that I can get my life back! Until then I will continue to push myself everyday!

[lcd8]

Sounds as if this is a problem that affects a lot of us. As well as my other medical problems I had a 'stroke mimic' in 2016 - an episode that affected me as a stroke would but wasn't a stroke. Since then my left leg has been weaker and although I can walk now it intermittently turns the wrong way and I stumble, without realising. I've been accused of being drunk before and it can be embarrassing because people generally don't realise it can be part of a BI.

[superstar79 in reply to lcd8]

When I did learn to sort of walk again. I was adamant that I would not use any walking aids. I would often have comments about being drunk as I would wobble, fall and generally look as though I was steaming drunk. The amount of injuries I had and still do get due to my poor balance and unusual gait would not change my mind. Until I had a really bad fall and ended up completely smashing my wrist. It had to be rebuilt with plates and pins. Then I used a walking stick and still do.

I was adamant that I could beat this and go back to normal.

I have had several mini strokes also and have other medical conditions that mean I am constantly in pain throughout my body.

There’s still a part of me that believes that I ca prove everyone wrong and fix myself!

[ghost_writer]

Hello, Superstar. I had a TBI at the age of 6 due to a road traffic accident, which broke off a very large portion of my head. After the accident, I could not walk or use my left arm (among other things) and I would constantly lose my balance and fall to the side. I needed a lot of physiotherapy and exercises, which helped and eventually I was able to walk again. My balance is still terrible and I am told that I walk with “ataxic gait”. Some people have noticed this and asked me if there was a problem with my foot the first time they met me (other people probably noticed but didn’t say anything). My head doesn’t shake but I get quite uncomfortable at high altitude such as when crossing a bridge, going up /down a high flight of stairs, hiking, etc. Later in life, I had some physiotherapy who gave me some exercises and mentioned that some Tae Kwon Do training that I did when I was younger seemed to have helped (it involved lots of circuit training including kicking and punching; although I was terrible at it, it seemed to have helped).

If it is any benefit, perhaps it helps to do whatever sorts of exercises you enjoy that can help with your balance /strengthen your legs (even squatting if that is easy enough to manage). If you decide to go somewhere with lots of things in the way /hiking, it helps to go with someone and also take your time (I feel quite embarrassed sometimes as I go so slowly but I cannot simply focus on what others think). Most importantly, I hope you continue to do your best and continue to be a “Superstar”! All the best with your health

[superstar79 in reply to ghost_writer]

Hi ghost_writer. Thank you for sharing your story and advise. It’s been a long road of physiotherapy sessions on and off for many years. My balance and the tremors in my arms and legs make it difficult and each time I am told that there’s no more that can be done.I do enjoy going for country walks with others! As you say it’s at a slower pace but at least I am out and doing something that I enjoy.

I am forever pushing myself in whatever I do, always have done and probably always will. Even when it’s detrimental to my health!

There’s a void that I feel in finding others who truly understand what it’s like to live with a TBI….well until I found this site!

None of us know our futures but I will not let my past destroy what parts of the old me are left! If that makes sense?

Having to now cope without my partner of 21 years is a daunting challenge and I am still going through the stages of grief, which is an emotional rollercoaster!

However, I will not be broken and will never give up fighting!

Thank you again for your advice

[Cornishwaves247]

Hi superstar79,

I can relate to your bobbing sensation within the brain. I also get this quite bad and it dictates my walking. I also have super bad balance which I’m working to improving but it’s a super slow journey. Due to the poor balance my independence with walking was kinda taken from me which I’m working on regaining. Can I ask was it your cerebellum which was effected? It was for me. I do believe the bouncing within the brain is easing though it’s a case of years not weeks in regards to the lessoning sensation.