Would really like to hear from other Ganglioglioma patients!

General discussion including use and side effects of various medication/therapies, and "what do I do now?"
Sarahrenee
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Would really like to hear from other Ganglioglioma patients!

Post by Sarahrenee » Wed Aug 05, 2009 5:15 pm

I have had real trouble finding adults with this tumour. I had mine removed 1/6/09 and it was a grade I-II.

richard1
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Ganglioglioma

Post by richard1 » Fri Aug 07, 2009 5:00 pm

Hi there - I had a ganglioglioma removed in March 2007. I was 33 at the time. The tumour was in the located posterior fossa on the occipital lobe. I was diagnosed after having seizures. the tumour was a grade 1.

Sarahrenee
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Post by Sarahrenee » Fri Aug 07, 2009 5:39 pm

Hi richard1,

Thanks so much for your reply. I didn't have any symptoms other than migraines which apparently were an unrelated symptom.

Mine was in the left frontal lobe.

How have you been since, no re-growth?

richard1
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Post by richard1 » Fri Aug 07, 2009 9:16 pm

Mine was 100% removed by surgery and as it was a grade 1 i didn't have to have any other treatment. The doctors told me the chances of it growing back are very low - however, that doesn't stop me worrying about it sometimes! everyone I spoke to and all the research I did suggested it is very rare for ganglioglioma's to grow back. I'm hoping thats the case with me...

I had a scan about 3 months ago which was clear and the doctors suggested the scans could move to 2 yearly... I had mixed feelings about that - glad they are confident but also 2 years is a long time to wait to (hopefully!) find out you're clear!

What about you - how are you doing?

Sarahrenee
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Ganglioglioma

Post by Sarahrenee » Fri Aug 07, 2009 10:45 pm

yeah i think that will be the hard part for me when the time between scans become further.



Well, my Neuro thinks he got it all. I am hoping he is right! My pathology also came back saying it had astrocytes and oligodendrocytes but said it had such an extensive amount of oligodendrocytes which was unusual for a ganglioglioma. So hoping that is a + thing not negative.

I have been trying to research what that may or may not mean but can't seem to find any answers.

I also have had no treatment.

I am starting to feel more human again after my surgery and I live in Sydney Australia and when you have any brain surgery here you can't drive for 3 months. I now only have 3 weeks left!

I have had no seizures, which I am very glad about!

CT scans post op have been good. Have MRI in october.

richard1
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Post by richard1 » Sat Aug 08, 2009 5:47 am

Hi Sarah-Renee,

I found the post-op time quite tough - but for me it got better with time. My tumour was very close to the cerebellum and i had problems walking after surgery so i had some time spent working on that. We were also in the middle of a massive house renovation at the time so the place wasn't very friendly for people who had to hang onto the walls to stay upright!

It sounds like you're you're doing really well and I'm glad they got 100% of your tumour. I do get quite keyed up in the times before my mri's etc but i guess thats going to just be the way it is for me!

All the best for your recovery - I used to live in Sydney and I grew up in Ipswich, Queensland however now live in Auckland with my partner and 16 month son. Love getting back when I can though for holidays!

All the best,
Richard

Sarahrenee
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Ganglioglioma

Post by Sarahrenee » Sat Aug 08, 2009 3:46 pm

Thanks for replying I really appreciate it! I wish you all the best for the future aswell.

Sarah

Warrior
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Post by Warrior » Sun Aug 23, 2009 8:45 pm

Hi Guys,

This is my case:
Diagnoses: Left Frontoparietal Ganglioglioma 21/08/09 after a seizure.
Age: 33yr old.

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kenobewan
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Location: Australia

Post by kenobewan » Sun Aug 23, 2009 10:59 pm

Hi Warrior,

Welcome to the site. Please feel free to tell us your story in the personal stories section. Have you started planning treatment yet?

Sarahrenee
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Ganglioglioma

Post by Sarahrenee » Mon Aug 24, 2009 8:53 am

Warrior, So have you had your tumour removed already?

They think they got all of mine. I had no seizures, had just been having headaches and lucky I had a great GP.

I was 31 at diagnosis.

Warrior
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Post by Warrior » Mon Aug 24, 2009 5:41 pm

It happened just this week, so it's all fresh and I'm having all these appointments, EEG tomorrow, Neurosurgeon on Thurs. As when the surgery is going to happen? I don't know yet.

Sarahrenee
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Ganglioglioma

Post by Sarahrenee » Mon Aug 24, 2009 5:49 pm

Silly me, I just saw you had written diagnosis 21/8/09. Are you in Australia or overseas? So they could tell it was a ganglioglioma from your scans, wish they could have done the same for me. They thought my tumour was an diffuse astrocytoma, until they did the op and they sent it off the pathology it came back as a ganglioglioma, so I was quietly suproed to hear the prognosis was better.

Hope your appts go okay this week, keep us posted.

Warrior
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Post by Warrior » Fri Oct 16, 2009 9:40 pm

I had my surgery 2/10/09. Histology Result came back as a Diffuse Astrocytoma/Ganglioglioma. They can't make up there mind. But I do not dwell on what the prognosis is. I had an excellent surgery lasted only 2 1/2 hrs and I feel good and I know what my body can take. Just eating healthy and living life as it should now.

Sarahrenee
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surgery

Post by Sarahrenee » Sat Oct 17, 2009 8:15 am

Hi, Glad to hear surgery went well.

Haven't heard of a mixed diagnosis like that yet for astrcytoma/gang. Like I said they thought mine to be diffuse astrocytoma until pathology confirmed ganglioglioma grade II.

When do you find out for sure what the diagnosis is then? Sorry but I am so interested in hearing more about there reasons for not being able to make there mind up on it.

Good to hear you are looking after yourself.

Sarah

Warrior
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Post by Warrior » Mon Oct 19, 2009 11:32 am

Pathology result says that some part of the tumour suggests it's a low grade astrocytoma and some part with a characteristics of a ganglioglioma. By the way how big was your tumour? Mine was 15mmx15mmx3mm. My head is still swelling and I've got these rashes that just started breaking out maybe from medication.

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