Initial diagnosis Ataxia but then a Brain Tumour

[Paper2021]

Hi all. Some of you may remember I was intially diagnosed with Ataxia in October 2021 and found this lovely community. Once I had my MRI I was diagnosed with a Meningioma Brain Tumour which was causing my Ataxic Gait. I was going to leave this group as it felt wrong as that is not what I have. Some really kind people asked me to stay and keep in touch on here. I had my surgery 3 Feb 2022. A full resection of the Tumour. Unfortunately it turned out as a Grade 2. I’m currently checked every 6 months and on anti seizure medication after having my first seizure hours after surgery. I’m really grateful to still be alive as I was advised I only had 6 months to live as my symptoms were getting a lot worse. They think the tumour had been growing for 15-20 years. I still struggle with my walking but it has improved. I still have other symptoms and Fatigue has been the hardest. I’ve had to give up my career as a Self Emploted Practice Accountant for 21 years back in November 22. I have found that very hard. I can still do the job but the volume of work and other things made it really stressful.

The reason to this post is to update those who asked me to stay.

I don’t have ataxia but life is still a struggle and I’m here for you all. 💕

Thank you for reading.

[wobblybee]

🙂 I’m so sorry about your diagnosis…but it’s good this was detected and able to be dealt with.

🤔It is likely..that you had Acquired Ataxia..caused by the Tumour. And as you have found..in some cases of Acquired Ataxia when the cause can be ‘treated’’…some symptoms can improve.

🙂Best wishes

[Paper2021 in reply to wobblybee]

Thank you. I think it was. The tumour was pressing down in my brain. I had trouble walking for years and my balance was awful. I then got lots of other symptoms. I’m grateful it was found.

[Seagull_48 in reply to Paper2021]

I am very sorry to hear you had brain tumour , but hope you will be better when they know the reason. I have all sorts of problems and 2 MRI scans do not show anything except age related wear. Did they find your tumour on the first MRI scan or after several? My wobbling gait is getting worse, but there was no cerebellar atrophy . Will you kindly tell me what we’re your brain tumour symptoms.

Thank you for reply and good luck🤗

[Paper2021 in reply to Seagull_48]

Hi sorry you haven’t had an MRI diagnosis. Mine was found on my initial MRI. They think it had been growing for 15-20 years. When I have my MRI’s they are about 40 minutes long and I have contrast dye inserted after 30 minutes. That makes it show up. Also my tumour was pushing on my brain and causing the Ataxic Gait symptoms .

My symptoms were getting progressively worse over 4 years. The obvious one was walking and my balance. I would often bang into furniture / door frames at home. Lived here 15 years so I knew where things were. I also kept dropping things. I felt very clumsy. Things that weren’t noticeable to others were intense Migraines that went on for days. I’ve suffered with Migraines for over 30 years but they were changing and more intense. I also was very forgetful and confused. My tumour was on the Front Trmporarl Lobe. I was only 48 when diagnosed. I also was affected by a numbness/pins and needles feeling all down the left side of the body. Also my concentration levels were very short. I was constantly falling asleep. Probably other symptoms but I can’t think of them right now. Every tumour is different. There are over 100 brain tumours. Have you had your spine scanned? You can get Meningioma’s on there too.

I hope you get some answers soon.

[Sea_]

I’m very sorry about your diagnosis but I’m so glad that you’re improving. ‘The new normal’ as they call it.

I had an SAH in 2011 and I diagnosed separate issue causing progressive cerebellar ataxia this year. I’ve found fatigue management difficult too . Hopefully you will find what works for you and don’t be too hard on yourself. Journaling helped me to identify the triggers and that overall I was improving.

I hope you feel what gives you joy and that it helps with the bad days.

You’re done so well and come through so much already thanks for sharing big hugs

[Paper2021 in reply to Sea_]

Thank you. I’m trying Journaling but I’m not very consistent at it. My dexterity was really affected. It’s getting better but I still have problems. Hopefully 2024 will being lots of improvements .

I’ve definitely realised life won’t be the same so I’m trying to get my head around that.

Thank you for replying it’s really appreciated. 💕

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😇❤