We Talk Brain Tumours

Thanks I think you're right. The odd siezure here and there is probably just something we have to get used to. There's always something new each step of this journey.

As for a G&T - I wish! being 18 weeks pregnant it's probably not the best idea right now (but oh how I wish....)

Brain Tumour UK have a very informative leaflet about bt and seizures.

The incidence seems to range from about 80% for some tumours/grades to about 20-30% with higher grade tumours. Although the position of the tumour also plays an important role.

Here is the url in case it is useful:

http://www.braintumouruk.org.uk/leaflets/2%20Epilepsy%20and%20Brain%20Tumours.pdf

Best wishes to all reading on this Easter Sunday.
xx

Hi all, spoke to oncologist the other day about my daughter's seizures. Mandy mentioned to me aboui the trimedial nerve (not spelt accurately)..They can control this with some drugs but if the tumour is growing near that nerve it causes pressure, may pinch it etc..and no drugs can change the effects.Only other option is surgery..which has been ruled out for my daughter. Types of seizure it can cause is: sensations over the face, gagging, nasty smell (this also makes my daughter gag), pain along the jaw line, pins and needle in the face and eyes. Just thought I'd pass this on..and thanks Mandy for your advice.

Love to you all

PEABS XXXXX

Hey Mandy . Hope u are well . . my step dad had a lympho somthing tumour 5 years ago as you no . it is now on the other side of his brain and is very aggressive . he has just come out of intensive care tonight and he is going to high dependancy then to a private room on a ward , so we can sit with him 24 hours a day . The staff said that if their is another seizer ( sorry . spelling is muddled. ) hhmm . they will not keep him alive . so ..... em . Thanks for the support . I will let you know when he passes away .

thanks for your support

Scott

Hi Scott, sorry to read your post.  You must be devastated but I hope that the hospital keep you step-dad as comfortable as possible and that you are able to stay with him throughout.  Take care

Hi Scott,  we haven't chatted before, but very sorry you have the need to be posting here. The very best wishes during a very difficult time for your family.

Peabs,  may I send our good wishes to you and your very brave daughter.

Best wishes to each and every one of you. Martyn XXXX

Hi all,

not a frequent poster, but today I need a little help...

last night my daughter woke with numbness of the right hand (usually probs are on the left side), and she couldnt speak. After about ten minutes she managed a few words but could only start a sentence, then couldnt finish it. After a little while she could speak more but the words were wrong, and very hesitant - for example she told me 'I cant read' but she meant 'I cant speak'. Other things she was trying to say were completely wrong - she called her hand an 'engineering'. Can anyone shed any light? We are waiting for our consultant to ring back. She was completely normal at 9 this morning and is fine now - just really tired. I have updated on profile-please read for background info. It was all pretty scary. Hoping someone has had experience of this.

Thanks everyone

Maggie

Maggie,

I haven't experienced that exactly but the fact that it happened at night then was better in the day reminds me of some experiences I had with my partner.
Unusual symptoms when he was lying down were caused actually by the fact he was lying down so the pressure from the swelling pressed on different areas.

I think I remember also that the way his head was held was part of the cause.
It was just after the first operation and he was still on steroids then so we upped them a little to reduce the swelling. It wasn't something that recurred after a few weeks after the operation.

Not sure if this will help you at all but just in case.
Best wishes,
xx

Hi Maggie,

That is very similar to how Doreen was pre diagnosis and is on occasions now.  She would call the cat a dog,  a pigeon a penguin etc and say she wants to go to the tennis when she means the toilet, and many, many more.  I suppose it is some kind of short circuit and  these very often happen in conjunction with a mild seizure, likewise the episodes leave her tired and recovery time can take a while sometimes.  Doreen's tumour is also a grade 3 astrocytoma, hers is in her left temporal.

Best wishes, Martyn

Hi Maggie

Although my husband has a different type of tumour it seems that symptoms are similar in all cases.  He is also on the same treatment as your daughter and has mobility problems - please see my profile.

My husband has also started to have speech problems like your daughter, but mostly when he is over tired.  Some days he doesn't stop talking and it is fluent and in a short space of time he is then getting his words muddled.

About 8 weeks ago, the day after having the canula part of PCV, he had a fall and totally lost his speech and couldn't even string two words together - very scary as you think that this is how it will be from now on in.

After speaking to our GP and Oncologist, they said that there was probably some swelling around the tumour and that the chemo could be causing a 'disturbance' in the brain which inturn could cause the loss in speech.  We were told to increase the steroid (dexamethesone) and after a few days, it came back again.

If Steve has problems telling me what he wants I just ask him questions so he only has to answer yes or no, I can usually work out what he wants and we manage to get there in the end.

If Steve says the wrong word I then tell him the correct word and get him to repeat it back to me - this is our way of keeping his mind active.  Although my husband has many problems caused by the position of the tumour, his brain power is still the same.

I do hope this helps a bit and I am pleased to read that your daughter's tumour has reduced.

Take care

Ann