[majier]

Hi folks! My name is Erin and I am 2 weeks into my recovery of a frontotemporal craniotomy to resect a ganglioglioma brain tumor in my right temporal lobe. After a lengthy surgery, my MRI came back clear. It's been a really long and tough road, but I am officially tumour-free... It's a great feeling, but still I find myself with so many unanswered questions. Having just turned 25 and been diagnosed with a rare tumour, I haven't had much of an opportunity to discuss the situation with someone who knows exactly what it is I went/am going through. Any brain tumour survivors out there? any gangliogliomas?

[Darlene]

Erin,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Glad that your surgery went so good. I did have brain surgery in 2009, it took a while to getting back to a normal life. My suggestion is just to take it one day at a time. I have had seizures ever since I was 10, since then I have not had one. I pray that you have the same results as I have had.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

[Wren]

Hi Erin -- Feb., 2006 I had surgery to remove grade ll, oligodendroglioma from my left temporal lobe. I was seizure free until May, 2007 when I had a partial complex seizure and was back into the hospital for another surgery - my left hippocampus was removed. I've been seizure free since then and now have the check-up MRI just once a year. I'm doing fine.
I agree that it's very difficult to find anyone in the same situation.... and it is a long, rocky road.
lol lol - you and I sure are different ......... I'm a 69 year old woman.
I'm very happy to see you in this forum.

[LJ12]

Hi Erin- I had an awake crainiotomy to remove a ganglioglioma from my left frontal lobe in July. I'm almost 5 months out and have already had one clear MRI. From the day I went into the ER in 13 days I had a biopsy, 7 MRIs, 2 CT scans and finally the awake crainiotomy. It all happened so quickly I didnt have time to process any of it. I am only 19 years old and so finding people who can relate to what I went through is very difficult and most people don't understand you're not completely healed just because you are physically better, mental health takes months to heal. This tumor was so rare and I'm blessed it was begnin. Hope you are doing well.

[keithrobbrown]

Originally Posted by majier

Hi folks! My name is Erin and I am 2 weeks into my recovery of a frontotemporal craniotomy to resect a ganglioglioma brain tumor in my right temporal lobe. After a lengthy surgery, my MRI came back clear. It's been a really long and tough road, but I am officially tumour-free... It's a great feeling, but still I find myself with so many unanswered questions. Having just turned 25 and been diagnosed with a rare tumour, I haven't had much of an opportunity to discuss the situation with someone who knows exactly what it is I went/am going through. Any brain tumour survivors out there? any gangliogliomas?

Hi Erin are you still online, I saw your letter on a search for information, My son Andrew is 25 and has just gone through 9 months of Chemo and radio therapy for a malignant Ganglioglioma. we were told he had a 1 in 4 chance of seeing Christmas but has responded very well to the treatment and is in really good health at the moment, I was wondering if you would like to communicate with him. He lives near Leicester, England.

Kind regards Keith Brown

[charleigh]

Hi my son is in recovery from ganglioglioma brain tumour he is 21, I was wondering if anyone else has had any long term effect, he had the tumour removed last year and seamed to recover well but I had noticed he loses his temper very easily and he has trouble remembering things

thank Charleigh

[Lara]

Hello Charleigh,
Welcome to the NeuroTalk Support Groups.

There are few posts that I can find across the forums here relating to Ganglioglioma apart
from this thread but you could try posting in the
General Health Conditions and Rare Disorders Forum

There may be members there who can help you with questions about your son's recovery post surgery.

The members on the
Traumatic Brain Injury and PCS Forum
may also have some ideas even though not specifically related to Ganglioglioma.

There is also the forum search feature

http://neurotalk.psychcentral.com/search.php

All the best to him and to you.

[Kitt]

Welcome charleigh.

[Daryl Scanlon]

Originally Posted by charleigh

Hi my son is in recovery from ganglioglioma brain tumour he is 21, I was wondering if anyone else has had any long term effect, he had the tumour removed last year and seamed to recover well but I had noticed he loses his temper very easily and he has trouble remembering things

thank Charleigh

hi charlleigh

I had a tumour removed 30 years ago when I was 13 and 5-6 months ago have finally been diagnosed with (Superficial Siderosis) as I am under 1 neurologist now

[GothSE]

Originally Posted by keithrobbrown

Hi Erin are you still online, I saw your letter on a search for information, My son Andrew is 25 and has just gone through 9 months of Chemo and radio therapy for a malignant Ganglioglioma. we were told he had a 1 in 4 chance of seeing Christmas but has responded very well to the treatment and is in really good health at the moment, I was wondering if you would like to communicate with him. He lives near Leicester, England.

Kind regards Keith Brown

Hi Keith
I have only just signed into this site and saw this message from last year. I hope all is well with your son and the treatment has worked well. I have ganglioglioma and had radiation therapy in the summer. I'm a little bit older - 49 :-)
All the best!
Emma