Brain Tumour Survivor

A site dedicated to leading edge treatment for brain tumours
It is currently Thu Nov 23, 2017 8:10 am

All times are UTC + 10 hours




Post new topic Reply to topic  [ 3 posts ] 
Author Message
PostPosted: Thu Jul 21, 2011 2:56 pm 
Offline
Registered User

Joined: Thu Jul 21, 2011 1:26 pm
Posts: 1
Location: Palmerston North, New Zealand
Hello all,

My name’s Mike and I’m from New Zealand, I was diagnosed with a Grade 2 Oligodendroglioma in January of this year (2011).
I was enjoying my summer holiday and gearing up for a full on year as it was the start of my internship. I got a knock to the head while playing basketball, which I thought nothing much of and just carried on playing. After playing basketball I went to the gym with my brother and had a good work out till the very end when I was on my last set of chin ups and I got a sudden very severe pain in my head and had to stop and sit down for a awhile. As I am a Medical student/ intern I was instantly worried that I might be having a sub-arachnoid hemorrhage, but when the pain subsided (about 5 mins later) I thought most likely I was being a bit of a hypochondriac! So I continued my workout. I went home not feeling great but not really that bad either, woke up the next morning with a headache and thought I need to go for a wakeboard that’ll make me feel better!! How wrong I was…. After about 2 mins on the wakeboard I got that sudden headache again and had to jump off and get to shore. Due to my parents concern I went to the hospital, however was told it was most likely a neck strain, I was happy with this and went home feeling good with the reassurance it was nothing sinister. However my problems continued and the early morning headaches persisted, this worried me as it is a pretty specific sign for raised intracranial pressure so we went back to the hospital and demanded a CT scan! Unfortuanately the CT scan did not herald good news. I had a 4-5cm hypodense area in my right frontal lobe. Basically It looked like a stroke, but it was an unusual place for a stroke so I was worried. The consultant (attending) thought it was just a simple concussion and rest and relaxation was the appropriate treatment course. However my family, friends and myself were not convinced of his diagnosis and demanded an MRI. The next day I got my MRI and it showed quite clearly a low grade malignant type of brain tumour. I was very lucky as I was operated on the next day and got a total resection!! With no complications and a speedy discharge from the hospital. My neurosurgeon was very good, very confident and reassuring about the procedure.

My pathology report came about a week later, confirming the neurosurgeons impressions that it was an oligodendroglioma grade 2. Unfortunately I wasn’t lucky enough to have the 1p, 19q chromosomal deletion which has been shown to be associated with better prognosis.

I am now about 7 months post op and feeling pretty good. I feel totally blessed to not have had any symptoms from the tumour (apart from the headaches). However I have had quite a bit of fatigue and mild headaches since the op. My neurosurgeon tells me this is pretty normal for about up to a year. I was wondering if others who have had craniotomy have experienced continuing headaches and fatigue, how they have coped with it etc.

All in all I am very grateful for the luck I have had I know things could have been a lot worse. Thanks for reading, feel free to ask me questions, I am going to post my pathology report up soon to maybe compare with others that have the same/ similar tumours.
[/b]


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 22, 2011 8:11 am 
Offline
Registered User
User avatar

Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Hi Mike,

I like your positive outlook! A positive attitude helps enormously.

I have an oligoastrocytoma 2/3 with a poor karnofsky score. It has now been 4 years since my operation and they only expected me to live a maximum of three.

'The Median is not the Message' an essay by Stephen Jay Gould and 'Anticancer' by David Servan-Schreiber may provide useful information to you.

I have a great team of doctors, but I have discovered they can only help me in acute situations, the rest is up to me.

I didn't have headaches, but the fatigue was bad up until this year (hence my signature). Lifestyle changes have made a big difference. I also discovered I am allergic to dairy and this wasn't helping.

David Servan-Schreiber believes that with lifestyle changes, he's a survivor himself, you can double or triple your survival time.

Ken.


Top
 Profile  
 
 Post subject:
PostPosted: Sat Jul 23, 2011 12:02 am 
Offline
Registered User

Joined: Wed Apr 21, 2010 7:06 am
Posts: 21
My husband has an Oligodendroglioma II and is going on 6 years since diagnosis on Sept. 25th. He had partial resection (debulked) the tumor sight which was like your Right Frontal Lobe, only his is in the motor track area by the paratial lobe. (hence only partial resection)... he did 12 rounds of Temodar and the tumor has stayed in remissive state since June of 06'. He had fatigue and was really tired that first two years. Since then he's done better but has boughts of fatigue weekly usually more towards the end of the work week.... he returned to work full-time 4 years ago.... he was in and out of work during the first two years. Today he is going in to have a cognitive/comprehension testing done ... he has started to show more signs of memory loss and some odd instances... such as getting a glass down out of the cabinets and a plate...going over to the stove and filling the cup with pasta alfredo and I caught him in time before he poured the tea onto the plate... He did process what he was doing after I called to him ... His answer was he was just really tired.. this was a Friday evening two weeks ago... There's more hyperintensities in his MRI this last time but the tumor is still the same size. So they wanted to do a full workup on him and some more blood testing. All in all he's been doing great. He is one of the lucky ones and has the 1p 19q deletions. However, it sounds like you have youth on your side. My husaband is 51 now..he was 45 at diagnosis... still young by many means but sounds like your half his age... and you have that going for you... Stay positive! Which it sounds like you are...! Maintain a healthy lifestyle and realize what you put into the body is what your made of..... that will help alot with teh fatigue and being tired.... find what exercise is best for you and what brings joy into your heart...! Blessings to you.....


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 3 posts ] 

All times are UTC + 10 hours


Who is online

Users browsing this forum: No registered users and 2 guests


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
cron
Powered by phpBB® Forum Software © phpBB Group
[ Time : 0.054s | 15 Queries | GZIP : Off ]