jaqk17
New User
Joined: 21 Feb 2009
Posts: 1
Location: SCOTLAND
|
 Posted: Fri Mar 06, 2009 3:38 am Post subject: my dad has a oligodendrioglimoa |
 |
|
my dad has just been diagnosied with a 5cm oligodendrioglimoa.
he started feeling ill before xmas and had the old sore head but put it down to his high blood pressure.
In 2001 dad had a seizure in my house, he went for a mri scan which we thought was normal.
6 weeks ago he was ill, he woke up with blood bruises around his eyes which were in his head and down his arm, he had bed sweats the night before and must have had a fit because he fell out of bed and hurt his arm although he wasnt aware, apart from having a sore tongue.
he went to work totally drained and his manager sent him straight to the doctor who dismissed the seizure, he went back to work for two weeks and he woke up sore, he had bit his tongue and his eyes were bruised again. hed fallen again with no recollection and we took him straight to the doctor who thought he had indeed been having seizures, within the week he arranged for my dad to see a consultant and she arranged scan etc,,, but on the friday my dad took a massive seizure, he stood up and his face collapsed and his arm when dead, he thought he was having a stroke so slide down the wall and managed to phone an ambulance. my sister happened to phone at that minute and phoned me to come. i just made it to the ambulance, and my dad was in a bad way, his eyes twitching and head moving, it was hard to see.
we got to hospital and dad had another masisve seizure which the crash team were called for . we thought we had lost him, but they managed to stabilise him and took him for a scan which revealed a mass, he was kept at the local hospital because there was no bed in the major hospital, over that whole week he has seizures every 5 to 10 minutes which they hadnt been able to control with meds, last sat he finally got moved to the big hospital. where he is now. the first hospital told us on the first night it was a tumour then we were told the other hospital thought it was a avm.
since he has been in the big hospital nothing has changed, they cant control the seizures and the scan has revealed this 5cm tumor, the rst of his body is clear.
we were told by the first consultant we seen that my dads first mri in 2001 was boarderline yet he hadnt been told or checked in that time,
the only excuse they can come up with is that it wasnt calcified and maybe decided that because he didnt have any more seizures it was left.
now my dad has the fight of his life due to all the blunders.
he is going down hill quickly and this is two weeks since his massive seizure and still nothing has been done for him.
they said the seizures are so hard to control and its trial and error.
i just want my dad here, he has been looking forward to his retirement in 3 years time. he has worked all his life and has always been a great man.
he is hardly looked near by the staff unless we make noises. he went blind the other night for an hour and he couldnt reach the buzzer and by chance a male nurse came in and he asked for the doctor, and an hour later when the nurse came back he said there was only one doctor.
my dad must have been so scared.
he has paid into the nhs for 47 years and has been totally let down.
is there any one with the same as my dad, id love to hear from you.
jackie |
|
Mama 2 2
Senior User
Joined: 29 Nov 2007
Posts: 107
Location: Sunshine Coast, BC
|
| Posted: Fri Mar 06, 2009 1:12 pm Post subject: Re: my dad has a oligodendrioglimoa |
|
|
Hi Jackie,
So sorry to hear of your dad's tumour, not to mention the lack of care he seems to be receiving. When my husband had his first seizure just over 7yrs ago, the ER doc missed the tumour on the CT scan - said it was probably a fluke and 1 in 100 people have a seizure at some point in their lives, and we were sent home. The records were sent to his family doc who called us asking what happened - he told us he saw something concerning on the scan. The next call was from the MRI department booking him in the next day. MRI confirmed the tumour, and the day following he had another seizure. Two weeks later was the surgery.
From what I understand from many others around here, the seizures unfortunately can be difficult to control and they have to work to find the right type/combination of medication for your father - this may take a bit of time, but hopefully they at least work on it. My husband has been on Dilantin for the most part, but when the tumour grew significantly last summer, it was no longer enough and they added Novo-clobozam and decadron (steroid) to reduce swelling. Fortunately, things came back under controll and he was able to stop the decadron (nasty side effects, you don't want to be on it long if possible) and has cut down on the N-C.
It sounds like there has been no biopsy to determine grade - have they given any indication if/when they will do that? When they do the biopsy it's also good to find out if he has the 1p/19q chromozone deletion - this will determine if they will likely treat him with radiation or chemo first.
It seems like a common approach these day with low grade gliomas at first diagnosis is to 'wait and watch' and not treat until there are problems caused by the tumour - they may be trying to use that as an excuse as to why they did nothing in 2001, but even if that was what they say, there would be no excuse for them not telling him about it! 
Sometimes I fear that people who are a bit older are not treated as well because they are not expected to have as good of an outcome, but that is just garbage. Its so important to find a medical team that will at least put some effort in. My husband has been taking a number of supplements to improve his overall health and has changed his diet and that seems to be paying off as though his tumour is now growing more aggressive, he still has very few deficits.
I hope your father can soon find the care he needs - and I hope you can find some peace in the midst of all this too. He sounds incredibly lucky to have a daughter like you - take as much time as you can to spend with him, share memories, laugh, cry, and cherish the fact you are still here together.
All the best,
~C~
_________________
Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis |
|
Search 
Email Digests
Register to post
Profile 
Check private messages 
Log in
What is this ?
We subscribe to the HONcode principles. Verify here. All content and posts are copyright.
