Walking concern....

[Cornishwaves247]

So I'm 16 months on from my AVM bleed in my brain. It happened in my cerebellum (back of brain). I have posted before and no doubt you think 'is she still asking the same question' but as you all know, recovery is real slow and frustrating.

My question is in regards to my walking. I can only walk assisted. Walking independently is pretty much non existent. I don't believe it will never happen though. I can manage a handful steps alone, but if real effort. I practice everyday and am fortunate that my dad takes me out and about to practice walking independently.

Did many of you have this issue? I find from what I have read over time that individuals struggle with their walking for maybe up to six months and then seem alright. Mine is taking forever. I bought myself a treadmill to help but I can't use it without holding on.

It's my balance I think which is causing much of my concern.

It has eased up but is still controlling me.

Advice please.

[steve55]

we are all different. the one thing we all need to have is patience and belief that one day you will be walking independently and who knows.......even running around.

its only 16months, thats no time at all in brain injury terms.

steve

[Shon48]

I’m the same , stairlift for bathroom and bed and a walker for walking . I have terrible dizziness and it is very debilitating and holding me back . I have a 28mm Aneurysm which was coiled (17) a stent inserted and an artery occluded in June the another stent inserted in September . The last procedure has left me with a right side of face numb, eye doesn’t close properly and can’t eat because taste buds are awful but it’s the dizziness that gets me down as I just can’t walk on my own . My speech is affected too , very slurry but haven’t had a stroke.

I hope we both get back to some normality soon . In my case I know it’s too soon though

Shona 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

[QuixoticAlbatross]

Similar but the bleed was post-surgical, not AVM. I'm 15 years in recovery. Getting better keeps happening, logarithmically. My walking recovery was pretty dramatic for the first two years, at least. But even now I'm better than a year ago. You'll get there!

[Mufc]

Hi

Have you been told by a physiotherapist you will never walk indipendantly. I was told by Drs many years ago I would never walk again but I am a very stubborn person and I do now walk in my home independently but not outside without a stick. If there are other people around I use a wheelchair as it is safer as my balance is rubbish. We have no control over how others walk. Do you have physio therapy? I still have it 22 years since my accident. The intensity of physio therapy has decreased it used to be daily then reduced over the years now on 3 weeks per year but may increase as I’ve now got to have a bone density test. As my bones break easily. We have to accept and like the new people we have become. It takes forever thought my tbi happened in 1998. I am still developing. Sorry but you have a long way to go improved will come over time.

Dianna

[Cornishwaves247 in reply to Mufc]

Hi Diana, I questioned myself as to if physio has ever informed me that I won’t walk independently again and I don’t think they ever have. Which is positive I guess. They have informed me that I may not achieve my baseline in recovery but I just have to keep walking assisted and in time symptoms will all settle. They may just be being kind though as they have no idea.... I have physio twice a month but I pay for that help. I have found there is very little support for brain injured patients.

Thank you for your reply. You are evidence that it takes along time but it recovery does happen. Persistence as they keep telling me.

[Mufc in reply to Cornishwaves247]

Yes you just have to try and be as positive as possible. No one knows what around the corner🤔. Unfortunately my husband of 24 years has now left me as he says he cannot cope with my moods any more. My thoughts are he now wants to live on a percentage of my awarded money. We were well insured so I was awarded money as I will never work again. I thing the law is wrong the money was given to me for my disability. He has got solicitors who say he is entitled to a % of my money. So my solicitor is getting me to go through lots of tests to prove I need my money to survive. Hard for me to be positive but I’ve survived through my disability so I will survive this. I think physiotherapists are vital for are recovery. I attend the Shelley clinic in Nottingham. Patty my physio gives me mental hope that I will continue to improve. I realise I will not go back to how I was just need to grow to like the new me. Hard when my husband has left me. So now I have to employ staff to assist me. Not good at all I am a very private person.

I’ll stop moaning now keep your hard work up. I’m interested to know how things go feel free to ask me any questions. I am not saying I can answer correctly but I can tell you how I felt/ feel I believe to understand tbi people feel you need to have experienced it.

Dianna

[Cornishwaves247 in reply to Mufc]

Thank you 😊

[Mufc in reply to Cornishwaves247]

😃. Are you by yourself or do you have people around that can help.? Sorry if you have told me before as you know this happens with tbi😂

[Cornishwaves247 in reply to Mufc]

I live with my parents so they are my help team.. my friends are very good with me and invite me to events which I can participate in. I have impaired vision at present which hasn’t settled as yet so in hindsight is still repairing

[rockyandfrank]

Hello

I also am having problems with balance - I had a 18mm aneurysm coiled in April and had a cerebellar aneurysm coiled on Monday. I started having motor problems in March 17 and have now been told that my balance issues are phsycological (not real) so your post has given me more insight into how long these issues can effect a brain injury. We all have to persevere and believe - having read lots of posts on this site - it has given me the will and determination. There seems to be no set time for continuing improvement - We just have to keep trying and as steve55 said - have patience and belief.

Sending you my very best wishes.

[cat3]

Hi Cornish. I'm 6+ years on and still struggle most of the time. On a good day I can walk in a straight line, but mostly have to concentrate quite hard to avoid bumping into folk. So don't ever feel cautious about repeating yourself...………..it's natural to need a top-up of reassurance every so often.

I drive longer distances or use the metro but, as soon as physically possible, I insisted on walking out for a paper each day as a sort of discipline.

Keep practising ; as Steve mentioned, belief is SO important in achieving mobility issues. And at 16 months you're still well within that 'window of opportunity' for improvement. Love Cat x

[Matt2584]

Hi,

I had 2 brain tumours in the past, both at different times. 1 in 96 and 1 in 98. and both were located at the back of my brain attached to the brain stem.

I had radiotherapy on the tumour/cyst in 98. The radiotherapy was supposed to shrink the tumour until gone completely but this did not happen. Apparently I had some sort of fluid in the tumour which was stopping the tumour from shrinking and MRI scans were showing that the tumour was pulsing/throbbing instead and this was causing pressure to the back of my brain, the cerebellum. This was also the time of my life when my balance became terrible. It took my mum and dad to hold me upright.

I have had further surgery in the past and the 2nd tumour/cyst has now gone completely and poses no threat. My balance has improved since 98 and I can get around on my own ok but it is no where near 100%. I walk with a stick as my left leg has got weaker over the years. It appears as if I have spasticity in my left leg as the muscles do involuntary stiffen up.

I do exercises on my legs and these days I am more of a naturalist as I don't trust modern medication.

I practice a little yoga every now and then. Stretching the leg muscles helps, especially with the spasticity and also some of the yoga exercises involve inversion which can send more oxygen to the brain. The brain needs oxygen in order to heal.

You can use an inversion table which flips your body upside down so your head is below your feet.

Some yoga poses, like the downward dog pose, is where you lower your head. It might not be as good as the inversion table but I find it is safer to do and quicker as well.

Also I think diet may play a role in benefitting the brain/balance.

[Cornishwaves247]

Thank you everyone for sharing your stories and providing hope 😊 I don’t believe it will never happen, it’s just super hard waiting for it to happen. I’m not sure if anyone else suffers with the fact their brain isn’t still. Mine is always unsettled. Its like bouncing around. If this would just settle (which I hope it does) I could then concentrate on my walking. Is this common do you think or am I just one of the lucky ones who achieves an uncommon symptom?

[Ecojackie]

I am two years out from my brain stem bleed from a rollover car accident that caused my stroke and TBI. Walking is still painful for me. I do walk unassisted around the house, but I use crutches when I am not feeling very stable. I can't be on my feet more than about 10 minutes when the back and leg pain get to be too much. When we go out, I have a power wheelchair that works out very well. Remember, we had brain damage and one does not heal quickly from that. Good luck.

[Shon48 in reply to Ecojackie]

I agree, it’s far too soon for me but I get so frustrated . I’m now able to walk in the house , look like a penguin but getting there . I have a stick at the top and bottom of stair in case the balance is well off . It’s the dizziness since the last procedure to have a second stent put in that causes me the most trouble but I know I’m wanting to be my old self again which I know I’ll never be. Physio stopped because of the dizziness so I just do the exercises for my leg that they gave me. I’ll be back in December for a couple of scans and hopefully the “beast” is tamed . I don’t know if I could go through this again been a hellish time since June . Thank goodness I have a husband and daughter to help me . Take care

Shona