Grade 3 Astrocytoma

[Nath250]

Hi, 6 months ago I was a fit healthy 31 year old carpenter, I was having the most successful year at work I've had, and generally in a state of happiness and excitement at the life I was living. Then out of nowhere, I woke on a Sunday morning in extreme pain in my legs and head. It got to Wednesday and I went to the doctors, they were baffled and sent me for every test possible..

 After a month or so of tests we found the tumour in my frontal lobe. The neurosurgeon was confident he could remove the majority in surgery, but I'd have to be AWAKE... ( so they could ask me to move my hand, arm etc). To myself I thought "This should be interesting".

  The surgery went well and they removed 90% of the tumour. I remember a lot of the surgery and think about it often. I also remember having a seizure on the operating table...

 Fast forward 2 months and I've found out that it's a grade 3 astrocytoma. I am currently undergoing radiation and chemotherapy at ONJ centre, the staff are all fantastic and very helpful. 

 I am wondering if anyone out there has had leg pain associated with this type of tumour, as the docs are honestly baffled.. My legs feel so weak and like I've torn both hamstrings and calf muscles, I can only walk for 20 minutes or so before having to stop.Hopefully it's not something else causing this pain...

 Anyway I know that was all a bit long winded but I'd like to hear other people's experiences.. Thanks for reading

[Susan_CCNSW]

Hi Nath250

It seems like the past few months have been like a very unpredictable rollercoaster ride for you and the leg pain you’re experiencing sounds very difficult and distressing. I hope your medical team are continuing to investigate and able to discover the cause of the pain so that it can be treated and give you some relief. Does anyone else in the community have any insights from their own experiences to offer Nath250?

Nath250, you may also find talking with the health professionals on 13 11 20 of benefit, they can talk with you about your current situation and support services that may be helpful to you.

Kind Regards

Susan

[annelise_dixon]

Yes I have leg pain too as well as numbness and pins and needles. Also having paralysis. Not sure of the cause yet as I am awaiting seeing my neurologist and neurosurgeon again. I will let you know what they say.

[Nath250]

Hi Annelise, 

how did you go with the leg pain? Do you still have any pain or pins and needles? I am approaching a year since my surgery and i still have the pain in both my legs. The Doctors are still confused as to why i have this pain at all.. Hope you’re doing well

[Kathryn]

Hi Nath250,

my husband was recently diagnosed with a grade 3 astrocytoma in his cerebellum. He’s had numbness in his right arm & leg but no pain. His main symptoms were dizziness, nausea, exhaustion and problems with balance.  

[Smiley2]

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@Smiley2 wrote:

I’m very sorry to hear that you have so much pain in your legs...I have with my cancer too, I have a rare form of non hodgkinsons lymphoma, have you thought of where you got this cancer from, I was exposed to wood dust ...ring any bells...just a thought..all the best..regards Smily2

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[Smiley2]

Sorry I’m new here and making mistakes...can’t take the two reply off

[Nath250]

Hi Kathryn, sorry to hear... I have some dizziness, lots of exhaustion but nothing in my arms.. mostly the pain in my legs, which still have the drs baffled... thanks for your reply and wish you all the best

[Nath250]

Yes I worked as a carpenter for 10 years, but the drs ruled out any connection.. my dad and grandfather both had brain tumours so the doctors are looking into that now.... what kind of leg pain do you have? Mine feels like I’ve ran a marathon and if I don’t take pain meds, it feels like I’ve torn muscles in both legs... All the best