Balance mystery

[ShareeRose]

I have developed a mystery balance problem which makes me do an uncontrollable sway when I’m standing talking to someone. I am in another hospital having the usual tests and scans and this time I’ve had a MRI which have come back clear. I’m now going to be seen by a neurologist?? which I’m hoping will give me answers. Has anyone experienced this?

[Hidden]

Hi Sharee, your bio says you had an incident at work followed by surgery. Have you had a head injury or stroke or something else. People may find it difficult to empathize and share their experiences and how they found answers or solutions if we don't know where you are coming from.

For instance, balance issues relating to head injuries and strokes are different. The solutions are also different.

[ShareeRose in reply to Hidden]

Hi Pinkvision. Thank you for your advice. I had a ruptured brain aneurysm and had the coiled brain surgery in march.

[Hidden in reply to ShareeRose]

Hi thanks, now people will have an idea about your experience and can relate it to theirs and will hopefully be able to help you out. I'm from the TBI side of things so don't know anything about strokes from experience but there are plenty here who have had strokes and will be able to point you in the right direction.

I can suggest a couple of books that you and your family can read, especially your family if they are struggling to comprehend what's happening to you.

'My Stroke of Insight' by Jill Bolte Taylor, she describes the affects of stroke from a neuroscience and personal experiential point of view.

She is a neuroscientist who had a stroke and gives the inside view of the experience. (she also fully recovered so that will give you and your family a lot of hope)

'Mindfulness and stroke' by Jody Mardula, Jody was a psychotherapist and was also the director of the Centre for Mindfulness Research and Practice. It provides a good view of the inside the head of someone after a stroke. This will help your family understand.

Hope that helps

[Pairofboots]

Hi, welcome. Head injuries, whatever the causes can result in balance issues, hopefully the neurologist will be able to identify the particular issue, even if there isn't a clear cause, physiotherapist and occupational therapist maybe able to advise on exercises or aids to make things easier. This group has many people with lived experience, everyone has their own stories and solutions, some you may find useful, but before you embrace anything, it is best to weigh up the pros and cons and speak to relatives, friends, and professionals to work out what is best for you. Headway has resources you can access via online or through phone contact, information how is pinned to this page.

[Phoenix_Faith]

Hi ShareeRose - looking at your biography (which is where I saw the context - as Pinkvision said, you didn't mention it in the text of your post, but I check the biogs of posts that resonate with me, which usually clarifies things) am I right that you are only a few weeks post-surgery? If so, you are extremely early in the recovery process. I had what sounds like the same condition (although I'm sure everybody has very individual experiences of it, and very different symptoms after it - which is why it can feel very lonely, scary and distressing, and very hard to know if the symptoms we are having are significant/transient/ 'normal') , and went from nothing at all to finding myself in a hospital bed. That was in November 2020 and I'm still having issues with balance, dizziness and nausea.

I haven't had your particular balance issue, but as Pairofboots says, you may be recommended for physio (if you haven't been already) or another treatment pathway. I was tested for BPPV and subsequently diagnosed with PPPD (sorry about leaving it to you to Google these abbreviations!), and have done physio ever since. Please do keep us posted.

Best wishes- Faith

[ShareeRose in reply to Phoenix_Faith]

My surgery was in early March this year but these symptoms have just started over the last 10 days. I have seen a Neurophysician today and will be seeing a Neurologist tomorrow and the plan is try and understand why this side effect is happening and make a plan of treatment for when I go home. thank you all for talking with me and it is such a comfort that I get when I’m reading your advice and experience.

[lcd8]

Hi ShareeRose. Can I ask whereabouts in the brain your aneurysm was please? Just interested as I have a brain AVM which gives me a bit of a sway when standing too. It isn't that bad but is a bit embarrassing as I'm aware of it and can tell others must be as well. In the past some people have assumed I've been drinking(!) and therefore I think it can be largely unknown that this is a side effect of brain injury.

[ShareeRose in reply to lcd8]

Hi lcd8 my notes state ‘left side MCA’. I’m concerned as it has come 6 months after my injury and surgery.

[lcd8]

Yes entirely understandable. I really hope your neurologist and neurophysician can give you some peace of mind and help. I'm afraid I'm not in a position to advise medically. But my understanding is that smaller deficits often show up after brain surgery but can be from the intervention rather than the condition itself. The brain is a complex thing and noone is sure why.

[Ideogram]

I definitely don't know the answer to this, but are you being referred to any kind of brain injury rehab unit, if one exists near you? I don't know if a neurologist will pick up all this (mine wasn't great, but maybe they will be given what happened to you), but a vestibular physio, eg through a rehab unit, may be able to help. Failing that, might be worth asking for a nurse on the Headway helpline to give you a call.

[ShareeRose in reply to Ideogram]

Hi Ideogram. Thank you for that. I’ve today been diagnosed with F N D by the neurologist in the hospital. I’ll also be having a full body MRI but I’ve had some quite traumatic episodes which 2 wonderful neurological physiotherapists have helped me through. They are going to guide me through some more sessions with a view to getting me home soon where the physio will continue. Unfortunately we don’t have any rehab units near me but I will ask about the vestibular physio that you gave me . Have a nice evening x