Ataxia after Brain Surgery?

First of all, hello everyone! It's wonderful just knowing that there are others like me! I was diagnosed with Ataxia(not sure which kind) about a year ago after I had a brain surgery to remove a tumor of the back of my brain, near/on the cerebellum. This has left me in a wheelchair :( I had a few questions in general to ask. Did anyone get ataxia the same way I did? Is it possible to get out of this wheelchair? I hate it. I feel like such a problem with it. My insurance will not cover me getting more physical therapy, sadly. The three months that I had it, I went through brain radiation too, which made me tired, so I didn't get the most out of my therapy. At all. I'm poor so there's not much more I can afford. Acupuncture is always something I have wanted to try, and I'm looking more into lately. I've heard its hit and miss from person to person, but does anyone here have some insight they can share on my situation? Has anyone here had good out comes from acupuncture? Oh. I failed to mention it, but I'm 21 if that helps.

Hi Wolfegang - Welcome!

I have ataxia that is hereditary so mine will never get better. I don't know about those that are idiopathic. I'm not sure why they won't cover any more PT. You might want to check with your doctor, therapists and the insurance to find out why the insurance isn't covering any more. (I used to work for a health insurance company). When I went the therapists would do an evaluation every so often and further PT was based off of that.

Well.......If it helps to know, I have Medicaid, and they have stated that they believe my condition is chronic, so they refuse to cover it.

I have hereditary ataxia but have seen dozens of docs & learned they know little about what is possible. One doc told me its possible for other parts of the brain to take over for damaged parts. I’m improving & that may explain why. PT is very very important to improve. See if the university hospital in your state (Atlanta) has a financial assistance program. They may see you free if you are poor. You have to ask & fill out forms. Call their Registration office. Otherwise see if there are any free resources to get help with moving and exercising. Don’t give up. Also see if you can get social security. Medicare would pay for PT. if you had cancer you should qualify for social security compassionate approval process which is much faster than otherwise. You may need an atty to help or do it yourself online. Be hopeful --it pays off.

ANY kind of physical activity will help. Physiotherapy, movement in swimming pools, pilates, DVD's with "wheelchair friendly" exercises, ebay for secondhand arm exerciser machines etc. Fight FIGHT for physio! Fight for what you need!

Contact the physio that you were able to see, and get them to print off the exercises you should be doing to help. Even if they need paying for the paper they are printing on, get them to provide a good list of helpful things that you can do at home.

Very best wishes and let us know how you get on.


I have a few friends who have ataxia due to a tumor being removed, although they are older than you.

As said FIGHT for the continuing PT. PT / excercise will keep you as mobile and active as possible.

Keep us Updated


Wales, UK

hi my name is mark , I have acquired Ataxia which will never get better , " BUT " on the good side it will stabilise over time and with physiotherapy I should return so some sort of normality in life , there is hope and a light at the end , although your in a wheelchair never give in , you will get there , YOUR NOT ALONE !! take care, hope this gives you some sort of reassurance .

I have had Cerebellar Ataxia for about 7 years so am a bit old hat. You could get your name a list and pursue Neuro-Rehab.

I have just been rejected as my Ataxia is not brain injury.You could try the charity Headway here in UK for advice.Some swear by Acupuncture.I think it may help with stress but may be expensive and not give you what you need. Yours is an aquired ataxia. Get advice from someone who has been down the brain injury route.One of our Dorset support group is in the same boat as you.

I am an acupuncturist with ataxia. Although I can’t needle myself I do take a Chinese herbal formula. It helps greatly. Its individualized so if interested see a licensed acupuncturist/herbalist. For your condition do not see a chiropractor for acupuncture

I got my ataxia exactly same way. As you say, it's seems a bit hit and miss. I am not in a wheel chair yet and didn't even know I had ataxia for some years after my surgery but things are gradually becoming worse and I may be in a wheelchair one day. A friend of mine has had all sorts of problems over the years and is now in a wheelchair. So it sounds as though your brain tumour was worse than either of ours - they said mine was a common low-grade tumour. As far as I know, it is all down hill from now. I don't know anything about acupuncture.

If you are stuck in a wheel chair, there will not be a great deal you can do physically but you need to look after your body Eat healthily because you don't want other problems as well as those you have. My teeth are now rotting. Nothing to do with ataxia but if I'd eaten less sweet stuff and brushed my teeth better, I may not have this additional problem. I have got problems with my hearing, my eye-sight, my stomach, my back and my bladder. These may or may not be due to ataxia but I wish I'd kept myself healthy. If you're in a wheelchair, exercise will be hard but I suggest you do all you can.

I suggest you learn something new and keep your mind active. I am now deaf. I wish I'd learnt sign language. I wish I'd learnt lip-reading. I wish, I wish, I wish ... so keep ahead of your ataxia and learn these things before its too late. I'm not saying you will go deaf like I have but try to keep agead of whatever problems are likely to affect you.

Hi Wolfegang from the UK, my name is Miles, I’m 49 and have had ataxia for about 12 years. I find that gentle exercise works best. I cannot walk but my physio gave me some general stretching to do thus keeping your body as fit as possible. You can do a lot just sitting in the chair. You must exercise, I know it tires you, it does me but it helps long term. I have not heard from anyone about acupuncture or any potential benefits it my provide. Have you looked at the ataxia uk site? Keep in touch, let me know how your getting on.

Miles, Warwickshire

Seven year and you're an old hat? I've had it 40 years so what am I?

Marie Turner said:

I have had Cerebellar Ataxia for about 7 years so am a bit old hat. You could get your name a list and pursue Neuro-Rehab.

I have just been rejected as my Ataxia is not brain injury.You could try the charity Headway here in UK for advice.Some swear by Acupuncture.I think it may help with stress but may be expensive and not give you what you need. Yours is an aquired ataxia. Get advice from someone who has been down the brain injury route.One of our Dorset support group is in the same boat as you.

Sorry to hear of your plight. I had the same surgery; had an abscess on my cerebellum and now have left side ataxia. I have no magic pill or solution for you but am considering medical marijuana, I’m willing to try anything!

Hi, Me and in my family four have SCA3 or MJD. I know there is no cure so I have not taken any medicine yet.

Have your tried balancewear belt, I heard they help to walk. My rest of the family is in India and the Balancewear do not supply these outside USA.

Keep it up.

The troble is everyone thinks they have the answer but every person is different.

Mine is a very rapid and constantly changing Ataxia so there are frustrations thrown up by that.

Marie, True .

The ATXN3 gene mutations that cause SCA3 involve a DNA segment known as a CAG trinucleotide repeat. This segment is made up of a series of three DNA building blocks (cytosine, adenine, and guanine) that appear multiple times in a row. Normally, the CAG segment is repeated 12 to 43 times within the gene. Most people have fewer than 31 CAG repeats. In people with SCA3, the CAG segment is repeated more than 50 times. People who have 44 to 52 CAG repeats are described as having an "intermediate repeat." These individuals may or may not develop SCA3. People with 75 or fewer repeats tend to first experience signs and symptoms of SCA3 in mid-adulthood, while people with around 80 repeats usually have signs and symptoms by their teens.

Source :

I am so sorry to hear everything you are going through. My mom was diagnosed at age 61 and passed at age 67. Axatia is a horrible disease and come to realize there is not a cure. My axatia is heridertary. I have a 50% chance of having the disease. My sister was tested and thankfully she is fine. I am afraid to be tested. My thoughts and prayers are with you.


I agree 101% on "Axatia is a horrible disease" .

My uncle had it for 20 years and his condition was horrible

1. Could not walk

2. Could not use his hands

3. Could not speak

4. Could not swallow

5. Could not move his body

6. Could not blink his eyes

7. And the worst part is , His brain would be working so he could feel the pain or his & others

I was very little at the time and was scare to go near him because of his appearance & the way he made the sounds while trying to speak.

I would feel road accidents would be less painful were you die & you are in heaven.

Just my 2 cents.

Hello Wolfegang,

I saw on your profile that you live in Georgia. I do to and I went to Dr George Wilnot at Emory University hospital, after suffering a stroke three years ago, which caused my ataxia. He is very nice, thorough and matter of fact. Here is his website:–iii-george.html
He is the Ataxia specialist in the area. The only problem was that I had to wait four months for an appointment. So if you decide to see him, do not wait to call for an appointment

As some of the members have told you, keep moving, exercise as much as possible or your muscles will atrophy and you will get weaker.
I will give you the link in my next post.
My stroke completely destroyed my center of balance and I could not walk or sit and had uncontrollable movements in my left side. In a few weeks, I relearned to walk. I went from wheel chair to walker to walking without aid. I am rather wobbly, but I walk. I use a cane for security, but not in the house. I still cannot control my left side, but both legs are strong and I continue exercising.

So, do not despair. You are very young and will be able to get stronger and cope better.
If you cannot get any financial help for PT, do the exercises from the NAF that I am posting right after this. If they do not do any good to your ataxia, they will help your muscles get stronger. It will not hurt to try.

My best wishes to you and as Alan said, do not give up.


Here is the link to the exercises
Good luck to you.