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Ataxia UK
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Symptoms of ataxia

Hey there,

What a lovely forum here,

So im a 17 year old guy living in Belgium

7 februari I got diagnosed with a braintumor(completely bengin and not dangerous) in my cerebellum it has been growing there for over 15 years i got it completely "successfully" surgically (14 februari not very valentineslike for me) removed just after my operation I showed not a single sign of ataxia , it was literally growing between the 2 little lobes of my cerebellum . My neurochiragant said everything is gonna be fine "over" time, after my operation I talked "normally" and saw everthing normally but 2 hours after my operation (when my anaesthesia was out of my body) I had this sudden Dystraria and double vision and poor limb co-ordination (eye's don't align poperly but individually normal) now im on physical therapy, i learned walking (after few weeks) but the thing that is weird is that my reflexes always are there and "save" me if needed which results in me not being able to fall, I always react (placing a foot or a hand preventing a fall) before any therapist. So I figured out this must be acute ataxtia, although my cerebellum is not damaged just had a tumor in there that was 5cm so could that tumor pushed my cerebellum? . I wonder if a post-op Mri can reveal acute ataxia? My neurochiragant hasn't even spoken about ataxia yet but now I'm not in the hospital where the neurochiragant works but different a one where is based more on therapy. I'll post a before mri too.

Friendly regards,

An uncertain teenager

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Hi Kelviec,

Firstly welcome to this site .

I'm sorry to hear that you've maybe acquired Ataxia as a result of your tumor.

Although I have a progressive SCA my reflexes are pretty good. I can catch a ball, as long as I don't have to move my body, I put my hands out to break a fall etc. However, I do still fall down, just if forwards then onto my hands first, then the rest of my body follows . . . , though I definitely don't save myself with my feet!! I don't know if this means that the Ataxia is milder or if it depends on the type of Ataxia. I don't yet know what type I have, except that it's genetic.

Keep up with the physical therapy, for me and many others on this site it's essential. Exercising makes a huge difference.

Take care

Love

Alison xx

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Thx for your reply! You gave more insight into this. In june I have another Mri let see what that says.. I'll keep this posted. And I'm always exercising

💪

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🙂 Hi Kelviec, a post op MRI would not necessarily prove you had ataxia, only if Cerebellar Atrophy were present, and this is not always the case with ataxia.

🙂 Log onto ataxia.org.uk... on the home page scroll down and click on NEWLY DIAGNOSED. Scroll down, click on 16-30s WEBSITE. If this interests you, contact the link 🙂xB

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Thanks for your reply,

You provided me good info!

Ill sure wil check that link out.

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Welcome to our Forum, Kelviec. My MRI brain scan showed only signs of age progression yet I had all the outward signs of CA. It has progressed a lot in 4 years too. Sorry yours was caused by an op. I hope you get a true diagnosis. 🤗

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Yeah a "real" diagnosis will be helpful, currently in living in uncertainty. Thx alot for your insight on this! Really appreciate that. Love the name btw!

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Welcome to Ataxia Forum Kelviec, I thought I was one of the youngest on this forum but I learn you are just 17. I hope this is just a passing stage for you. It is really good to be able to reach out to such lovely understanding people here. Take care Carole x

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Exactly! people here are very sweet Xx

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You have been through a lot, lately, with the brain tumour, and removal operation, for a youngster. Sorry to hear all that. I can relate! When I was a young man, around 35, I was having Ataxia symptoms. After MRI's were taken, and an invasive angiogram, it was discovered that one of my artery's, in my brain, was somehow attached, to the brain stem, at the cerebellum/pontine angle, where cranial nerve roots, like for the face, throat, etc. enter the brain, and as a result, there was compression, causing my Ataxia symptoms. This is a rare disorder to have, and it is inoperable. So, anyway, the docs put me on blood pressure medicine, which helps, but does not completely alleviate the Ataxia. So, perhaps, with you, some of the problems might clear up, and get better, with time. It takes a while for the brain to recover from an operation and/or injury. Your neurosurgeon and/or neurologist, is the person who can give you the best information, on the why's and how's of the problems you have been having, because they can analyze, and have all the information. Perhaps they will have to take another MRI. I hope your vision returns to normal, and that the dysarthria and poor limb coordination will ease up and go away! Good luck, and keep us informed.

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Thanks for the reply really appreciated, in June I'll have another Mri and an meeting with my neurosurgeon so I'll know more than, I'll keep this posted for sure. You provided some good information thx!

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Hi Kelviec,,

see how it goes...It could have been your body reacting to your tumor free cerebellum...Definitely when ready, have your mri scan, as all sorts can be seen on that...

Fingers xed it is temporary...

Best wishes,

coat2003

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Yeah I'm hoping that too, I said to my neurosurgeon the word Ataxia and he said :you may feel like that now. You are going through alot of suffering right now aren't ya? Than he begon how dangerous the tumor actually could of been. So I geuss I just have to be wait and see.. I'll certainly know more in june

Ill keep this posted

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Welcome

Excellent news got the tumour and not malignant, Hopefully is temporary. Great tips from everyone x

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Dear Kelvic, I'm years older then you (you could be my grandson...,ha!), but I can relate to your ataxia symptoms. I've had ataxia for 20+ years, NOT from a brain tumor, like you, but from Niemann Pick C disease (finally found out in 2017 why I had ataxia) which causes ataxia symptoms Hopefully your ataxia symptoms will go away in time, as that was very very traumatic to go through surgery at such a young age, I'm sure! Maybe your cerebellum was tramatized also, temporarily! Keep doing your physical therapy! I'm so glad your tumor was benign, as that is truly a blessing! An eventual MRI will tell you more, I'm sure! This is a great site with wonderful/supportative people! My best to you..., ;o)

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Thanks for the reply really appreciated,yes this is a great site! Well geuss I need to be patient and see.. That's quite frustrating not knowing anything. And with my dystraria I can't speak to anyone so socially is not that good. But thank you for taking your time to reply! Physical therapy is kinda rough though but doing it daily! I'll keep this posted. Thx alot.

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You have been through a lot, always take your life with caution being that your health is sketchy. The great thing about help is getting it sooner then later on, when it's not a great out look.

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Many on here probably wish they could be 17 again and have gotten help sooner, to have choose life better.

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