there is a linkage of 3 items that determine balance. The Oculomotor linked to the Vestibular linked to the Flocculonodular lobe in the cerebellum. A problem with either of these can cause balance problems. The Oculomotor is what you see. The Vestibular is the balance centre in the ear. The Flocculo is in the cerebellum and processes the information from the other two and then determines your position in space.
In my case it is the flocculo that is damaged which then affects the vermis (the centre dividing band on the cerebellum) which then results in truncal ataxia. The brainstem is also damaged which paralyses the truncal muscles.
Here is the joke bit --- the Neurologists dont understand this area of neurology so come out with the "all in the mind" rhetoric

Wonderful post, Jackie - obviously, you don't have any intellectual-area brain damage from the damage to your brain stem, which is always good! I heard what you are saying re the "all in the mind" syndrome from specialists. I have heard various versions of this, to include [esp. when you are a woman], "You've been reading too much Redbook" [a one-time woman's magazine in the US, apparently one containing medical-type articles]. You seem to be extremely knowledgeable, as I continue reading your posts, and you are certainly a valuable contributer to Neurotalk. billie

I have been diagnosed with TOS and had a rib removed. Now I question that diagnosis. I wish I had prior to allowing them to take my rib, now I have many new symptoms as well as some of the old. If you do get diagnosed with TOS please, please get a 2nd and 3rd opinion from a TOS specialist prior to allowing them to remove any part of your body, I wish I did! I suspect that TOS is the new carpel tunnel, or ADHD, etc. "everyones getting one ya know"

I'm so sorry I didn't see this when you first posted this.

I know exactly what you are talking about. And I can tell you exactly
what vestibular rehabilation is.

You need to locate if you have not gotten help a neuro that works
with the eyes.

1. You will be sent for physical therapy were they will retrain your brain.
To learn to walk and to do other things.

2. Like to balance, walk, train your eyes to not be dizzy.

I had this training after having the problems you have for almost 50 years.
Yes I'm 51 now. I've had more than one TBI or PCS thanks to some of
these problems. But I found the doctor I mentioned and he did some of
the test you described.

I was diagnosed with a disorder and given this treatment. And I can state that it helped immensely. I really hope you return. I would like to see this
news reach you.

Donna

Hi

Thanks very much for your reply. I have an appointment with an ENT on Friday so hopefully I will get some vestibular rehabilitation. I have found some exercises, etc in some of the reading I've been doing but nothing has helped.

My parents have recently have bought a Wii Fit which I've heard some hospitals now use as part of rehabilitation too, been
practising a lot on the balance games, but absolutely no improvement!

It might sound strange too but I swear we've noticed that my dog Honey has sensed before the dizzy spells start. She'll come up and lie next to me and start crying, 10 to 15 minutes before they come on, if I'm in a different room or upstairs she'll come to wherever I am

i cant remember, have you been worked up for seizures?....there are multiple cases of dogs recognizing the pre seizure state.....good luck

Thank you for stating this. I want to second this. Please make sure
your doctor also knows about the dog knowing about the actions before
they happen. It really sounds like you are also having simple partial
seizures too.

Which means you need to be put on a seizure medication too. I also have
a son who has seizures who has this problem.

Donna

Hey Everyone

Thanks for all your replies, I really appreciate all of your input.

Well, I had an appointment with ENT yesterday... the consultant ruled out vertigo as I fail to show signs of nystagmus (spelling is prob wrong!) I couldn't really understand him as he was foreign but sai something about it being possibly a cerebelleur problem.

Looks like it's back to the drawing board....


I've read about yours posts about it possibly being partial seizures, nut if it was that, would the dizziness really last all day though?? Well, I'll have to wait to see the neurological consulant, not sure when it will, he be mentioned it towards the end of the the year...

Serene

Check out to see if you can do physical therapy for vestibular problems.

It really sounds a lot like this might be part of your problems. I know
that the vestiibular physical therapy really helped me.

Donna

Hi Dmom

Well, the doc is not sending me for any kind of vestibular problem as he ruled stuff like that out, so I guess he feels it would be a waste of NHS resources if he did. With vestibular disorders from what I have read are charactersied by nystagmus (involuntary eye movements) which I didn't have