Hello Everyone, My name is Margaret and I am 47 years old and live in Northern Ireland. When I was 24 years old I was diagnosed with a brain tumor. After the surgery to get part of this removed I was diagnosed with Cerebellar Ataxia. My balance and co-ordination can sometimes cause me difficulty. I could never use crutches or a walking stick as I have problems with balancing on these. When out and about I usually have someone with me who I can link arms with them, I am able to get about well this way most of the time. About 12 years ago I started to have a problem in my throat that both I and my doctors are still confused on. It feels like I am constantly swallowing and trying to catch my breath. This can last for a minute or so and my voice becomes croaky and distorted while it happens. Sometimes this can feel like trapped wind trying to get out but cant get out, it can be uncomfortable.
I am wondering if anyone on here has been diagnosed with Cerebellar Ataxia through a brain tumor? I would also like to know if anyone has the same problems with their throat?
Please reply and let me know. It is great to see all the support on here =]
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maggsataxia
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Thank you for your post. I am sorry you have been having these difficulties with your throat. I am sure it can be very distressing, both the the problem itself and not knowing what is causing it. However I don't think it is related to your ataxia.
As you probably know people with cerebellar ataxia do develop swallowing difficulties and this is part of a progressive ataxia, which is often genetic in origin. As your cerebellar ataxia was as a result of a brain tumour, like a head injury, the ataxia doesn't progress. As a result you would not develop any new symptoms later to when the injury, or in your case the surgery to remove your brain tumour, actually occurred.
I know you have been searching for answers for a long time as to what is causing this but I hope you find that answer soon.
hi maggsataxia i was dignosed with cerebellar ataxia after a massive bleed in the balance part of the brain stem age 48 i also cannot use sticks or crutches but balance is so bad i use a wheelchair outside, i have problems swallowing and choke quite alot, i am on a soft diet and thickener in my drinks
This info might not help but there are a couple of similarities.
I'm 60 yrs old, had a brain tumour removed from the lower back of my head when I was 12 yrs old , no real issues until about 15 yrs ago , swallowing meat became tricky without cold orange juice to assist.
Also a lot of leg jerking at night. Really don't know if all related. I was told original scarring hardening could be the cause.
Unrelated but Prostate cancer required that organ to be whipped out leaving me with a bladder that that won't always wait long enough so I have become more aware of public loo locations
About 5 yrs ago my balance became noticably poor but just managable , Ataxia was diagnosed with the requirement for a wheelchair to be likely in the future but I'm not so convinced.
A TIA occurred a year ago and has left me weaker but coping on medication
Apart from that .........
We have decided to have a dowstairs wet room and loo installed and I can't wait !
The good news is that Spring is here and the evenings are getting lighter and the Allotment beckons!
A lot of wobbles can be assisted with the help of a garden fork or spade and its amazing how a wee helps speed up the compost heap,
I have cerebellar ataxia and have great problems swallowing . speaking- I was referred to the speech and language therapist and that made all the difference. I just have to have a glass of water at hand always . I am now in a wheelchair and waiting for the council to put a ramp to my front door so that I can get out. I do exercises CA is not pleasant as nobody seems to know much about it but I live alone and get on with it do classes to try to keep my muscles moving- I feel so flabby with no muscle tone . I have too much CSF in my system so in April they are going to do a lumbar puncture to see if that helps.keep going and keep smiling 1 ! spring is nearly here ! love Sylviaxx
I have a very similar story to yours. Diagnosed with a right side CPA benign tumor at 30 years old, I was diagnosed with ataxia post op but managed to lead a normal life (mostly).
I am now 60 and the tumor returned in the last 18 months and grew rapidly, nobody knows why after such a dormant period. The tumor caused me gait problems (severe) it put me in a wheelchair, diplopia and dyphasia. I am just out of hospital in the last 10 days after de-baulking of the tumor.The consultant considers he was able to remove most of it and is 'cautiously optimistic' to see me in 3 months for my post op scans and presentation of my symptoms. I need to add I also have a VP shunt fitted due to the tumor blocking some CSF drainage.
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