Cerebellar Cognitive Affective Syndrome (CCAS)

Has anyone been diagnosed with CCAS? Would like to share experiences. Thanks

[StrawberryCream]

Just looked it up as a new one to me! Have you been given the CCAS diagnosis?

[Hidden in reply to StrawberryCream]

Yes I have been diagnosed with CCAS StrawberryCream. I have also been diagnosed with Cerebellar Ataxia. Just recently CCAS has been diagnosed as a component to the Ataxia I have. I had a road accident when I was six years old and not sure if there is a connection between my accident and my diagnosis? After my accident I suffered from a double fractured skull resulting in brain damage. 

[StrawberryCream in reply to Hidden]

Maybe there is a link to your bi as a child but you probably will never be able to find any specialist that will be able to tell you for sure. Maybe you would have developed CCAS anyway or that the road traffic accident did make you more susceptible. How have you been in the intervening years as a result of the tbi? I have bi difficulties that haven't been explained properly and I have been passed around the specialities but keep getting told its depression. However, I'm not depressed and the various antidepressants that were prescribed over 3+ years actually exacerbated my problems to the extreme.  It must be a relief to you that your neurologist recognized that something more was wrong and investigated you very thoroughly. Do you agree with the diagnosis? Also like CAt has asked have you received supportive follow up at therapies to manage your difficulties or ......is it like many of us with our bi that it's a postcode lottery as to what's available and too frequently not a lot or zilt?!

[Hidden in reply to StrawberryCream]

Not sure what you mean by 'I may have developed CCAS anyway' StrawberryCream? I don't know how else such a Neuro psychological condition develop in the first place? At school I always struggled with concentration and behavior issues. I suffered complete hearing loss in one ear as a direct result of the accident and I think this was partly blamed on my overall behavior. I suffered from severe depression in my early twenty's and was out of work as a result for a number of years. Thankfully I fully recovered from depression with help from a non judgmental and empathetic Psychologist. I do agree with the diagnosis. It all makes sense to now albeit 47 years after my accident. Thanks for your reply StrawberrCream.         

[StrawberryCream in reply to Hidden]

Some neurological conditions can develop not related to a brain trauma but by your reply I am now realising that saying that just highlights my ignorance of CCAS. Sorry I haven't ever heard of it before and the little bit I quickly read I thought linked it to lesions in the brain so I assumed as they can be caused in many ways.  I have lesions in my brain but they were not caused by a tbi. Probably shouldn't have responded rather than proffer unhelpful ideas! You have clearly had a tough time throughout your childhood and as an adult. 

[cat3]

Never heard of this 'til now Iain.  But, like Caroline, I've Googled it and I'd be very surprised if it wasn't related to the brain injury.

The symptoms are very similar to after effects of brain injury.  Have you had much help in managing the condition ?

[moo196]

Yep - I had to look it up too - and would say that according to the symptoms it seems very related to things that many of us have/had on this forum .... maybe just not given that label ? 

[Hidden]

Thanks for your replies. I find them helpful. I've not had much help at all cat3 but my diagnosis has helped me understand some of the behaviors I express at present and in the past. My accident was around 47 years ago. When I was diagnosed with Cerebellar Atrophy/Ataxia in 2010 my Neurologist knew there was something else. I then underwent (as a hospital in-patient) intensive Physiotherapy, hand/eye and lower limb therapy/test sessions and other mental and physical tests. Shortly afterwards I was then Diagnosed Cerebellar Atrophy and Ataxia with CCAS.    

[cat3 in reply to Hidden]

Iain, I you haven't contacted them already, you might find it useful to phone the Headway helpline.  They have brochures which can help you understand, and manage, your symptoms.  They're helpful and friendly and the call is free.

Their number is 0808 800 2244 and they're available 9am-5m, mon-fri.

And please stay with us ; you'll be so welcome here.  xx

[cat3 in reply to cat3]

Seem to have intervention from an italic ghost in the machine !

Didn't change any setting at my end, so what the ??

[RogerCMerriman in reply to cat3]

It's this site, been doing it here, on laptop and iPad and only this site.

[cat3 in reply to RogerCMerriman]

OK thanks Roger !   x

[Hidden in reply to cat3]

Thakyou cat3. I'll give them a call and post how I got on.

[cat3 in reply to Hidden]

Yes Iain, please come back and let us know how you get on.  xx

[Hidden]

I sent them an Email cat3. Awaiting a reply.

[cat3 in reply to Hidden]

Good lad Iain ; hope you hear back from them soon.  xx