Archive for September, 2015

Friday 18th Sept 2015, had a consultation regarding medication. Nothing exciting or too interesting.  Still having seizures on average of every two weeks is too much apparently, the meds are obviously not working as desired regardless.  1000mg a day is a small dose so my Keppra has now been increased to 750mg in evening and 500mg in the morning for two weeks and then 750mg both morning and evening to see if that settles them. This has to be done slowly because it takes about a week for any changes to settle in your system.  Either way I am starting to rattle as I walk now 😉

So the myth of missing a dose causes seizures can be settled now 🙂

Wednesday 25th November 2015, Keppra incresed last month to 750mg morning and 500 evening and then 2 weeks later 750mg both morning and evening. Seems to be no change and getting minor seizures around every 10 days. Will be seeing the nurse at the local GP, don’t know why as I am under consultants for reviews.

On the 21/8/16 my Keppra was increased to 2,000mg a day and as this hadn’t helped much it was increased to 2500mg per day. I’m getting no side effects but feel this had no real effect on me.

It was decided that I should increase my Lamotrigine to 450mg a day and on 02/07/17 this was completed (as you know it has to be increased slowly). This has had a slight effect of reducing the length of the seizure and a minor changed in strength of the seizure. It was discussed that I may have to be put on another tablet.

 

News

Posted: September 17, 2015 in News
Tags: , , , , , ,

Not going to fill this section with news articles so will link news stories from elsewhere…

The iknife, not Apple lol … http://www.bbc.co.uk/news/health-23348661

New scanning technology to help determine extent of tumours… http://www.bbc.co.uk/news/technology-34210351

More to be added when available.

 

There are many types of brain tumours, the most common are low grade and classed as benign, they are grade 1 to 4. While the below is general information not all cases are the same.

1 – Benign – Can be removed and may never return.

2 – Can be removed but almost always grow back and according to some sites survival rate is around 5yrs without treatment.(kind of a no brainer really 😉 )

3 – Cancer, can be removed but life expectancy low. Around 18months without treatment.

4 – Cancer, grows fast and spreads through the brain and can’t be removed. Survival without treatment is about 3 months and even with treatment not many survive past 3yrs.

As explained in the blog, mine is a grade 2 and as 99% has been removed we have no idea on my life expectancy. People say money can’t buy you happiness but it certainly would for me, I got some time to do things I would like!

Back to point 2, I’ve read many websites and even white papers regarding the classification of a grade 2 being cancer or not. Theory is that it is slow growing so is cancer, I’d be interested in other views or experiences.

Bear in mind that a lot of what you find is based on American studies, the UK seems to be lacking.

A link to a fellow blogger covering a lot of information like my blog…

Brain Tumour Warrior


 

There are a lot of sites out there that can give you info and help from forums to support charities, I never used any support charities but here are some links I did read through…

http://www.braintumoursupport.co.uk/


Everyone know MacMillan but here is their link in relation to astrocytomas…

http://www.macmillan.org.uk/information-and-support/brain-tumours/types-of-brain-tumour/astrocytomas.html


A good group to join is the facebook group “The brain tumour charity”, there are over 3,000 members all of which are supportive and in similar situations…

https://www.facebook.com/groups/114009085471466/

or the website…

http://www.thebraintumourcharity.org


Another good website to have a look at is..

http://www.braintumourresearch.org/


Another good support group I found is the astrofund who concentrate on the support for those with low grade Atrocytoma tumours…

Website : http://www.astrofund.org.uk/

Facebook Group : https://www.facebook.com/groups/240720846050761/


Other links can be useful such as Wikipedia, NHS, WEBMD and just google but be careful what you read as almost all sites tell you that you are going to die.

 

15th Sept 2015 – To Present Day updated with latest scan result.

15th Sept 2015 – Medication updated with more info and picture.

15th Sept 2015 – Recovery – The First Week updated with picture.

16th Sept 2015 – Info – links to support.

16th Sept 2015 – Brain Tumour – types and mine.

22nd Sept 2015 – Medication – Medication Update

26th Sept 2015 – Info – links to support.

10th October 2015 – News – Treatment

25th November 2015 – Info-  brain tumour charity website and brain tumour charity facebook group

23rd December 2015 – Blogs – various new/alternative technology/treatments

19th February 2016 – Blogs – Positivity

31st March 2016 – Blogs – Dying Light

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Going through the whole process from seizures to surgery you will go through a number of medications too. The first port of call will be epilepsy medication unless they the cause first.

There are many epileptic medications available but mine was Lamotrigine branded as Lamictal, it is used in an attempt to control the electrical activity in the brain that can lead to seizures. You will most likely be started on a low dose due to some of the dodgy side affects. Basically if you get a rash seek medical help immediately to get it checked as it can lead to blisters and your skin falling off.

As my body tolerated it well the dose was increased to 150mg in the morning and 150mg in the evening. I love the way they use the word “tolerate” !!. As this didn’t work too well I was moved on to Levetiracetam as well. This is branded as “Keppra” so it is easier just to call it that. This has similar side affects as Lamotrigine so seek medical help if you have any rashes.

Keppra did seem to work better and serious seizures stopped up to present day. At present I am on 500mg in morning and evening, you maybe put on more or less depending on circumstances.

5 days before surgery you are likely to be given Dexamethasone which is a steroid used to reduce inflammation, I was told this was to reduce swelling for the operation. One problem is that it makes you starving all the time and they give you Lansoprazole to stop your stomach getting damaged. This was the case with me and I could eat all day and still feel hungry, in the end I resorted to drinking milk or water a lot. After the operation you can come off it slowly.

After surgery there was some other medications that I can’t remember but in total I was taking around 30 tablets per day all carefully planned out. Luckily, if you live in the UK you will be given a medical exemption card that means you don’t pay for them.

The advice I can give for all this is take them according to your doctors instructions, don’t change anything and I wouldn’t read the side effects or look it up on the internet as it will more likely worry you.

If I find what else I was taking I will update this blog.

After having surgery I was advised that there are a number of things that could happened and I would need MRI scans every 3 months and reviews on medication every 6 months. The things that could happen are…

  • Become seizure free
  • Seizures could be slight
  • Seizures could be worse due to scaring on brain

Luckily up to now I have only had slight seizures every so often especially if I miss a dose of medication or take it too late.  The seizures started off very slight and you wouldn’t know I was having one.  These have started getting stronger but nowhere near as bad as they was and they do not affect what I am doing at the time I have them.

At the moment my flicker to left and I may move my head but I am able to talk and do things while it is happening, usually I will try to hide it as it passes in a about 10 seconds.

Due to the fact that in the past I have had grand mal seizures I am unable to get my driving license back until I am a year free of minor seizures. It does have benefits as I can now be taxied everywhere and can drink :).

For now life will continue as it has before but “Life moves pretty fast. I do stop and look around once in a while, as I don’t want to miss it.” 😉

Hope you enjoyed this rather long winded true story, I will update it as things happen until the time comes when I can’t.

Other blogs will be information that might be of help so for now that’s it and have a listen to this…

Life without brian.

15th Sept 2015 – A meeting for the last MRI scan to see how the first year of recovery has been went well and there has been no growth.

Next meeting will be March 2016 to discuss the next scan.

The holiday was a great holiday and we were camping for two weeks, such relief to get the kids out of your hair. It would have been a killer staying at home for the remainder of the school holidays.

With me having a keen interest in photography and my feeling in my hand and fingers back to normal, I was able to use the camera properly again (which was important to me).  If I have lost the use of left hand I don’t know what I would have done.

I like landscapes…(from holiday)

SONY DSC

Sunset

With me getting better week by week I was able to go back to work full time 5 weeks after the op.  It was suggested by surgeon that I go back part time after 6 weeks if I felt ok and if not I could be signed off longer.

My employer had been really supportive over the whole process from diagnosis to operation and recovery so I decided to go back full time on 1st Sept 2014.

At first it was weird being back as you had just been through a major ordeal, not feeling 100% right and people not sure how to approach you.  To break the ice I just spoke about it freely and made a laugh and joke about it such as…

Staff : How you feeling?

Me : Glad to be back, it’s a weight off my mind!

Jokes such as this continued, questions asked and soon enough it was like I had never been off or had an operation.

see to present day.

The first week after being released was a simple case was sitting around bored, resting and sleeping when I could, due to resting a lot I was advised to keep my sexy compression stockings on which is understandable.

26th July 2014 I was able to sit out in the back garden enjoying the sunshine relaxing in the shade and had the pool out for the kids also dipping my feet.  Was really great to get out for a bit.

With the passing of each day things got better and in the first week you can have your staples out.  Now some people may be worried about this and I was certainly anxious but there was no need.  There was no pain at all and all I felt was a kind of pinch sensation. The concerning thing for me is when I walked in to have them removed I had a newly qualified doctor who looked very nervous and taking a drink of water before proceeding – lol

With them being removed you can then wet the scar and give it a bit of clean providing there was no problem with the scar healing.  A sigh of relief as mine was fine and I could now clean my head, they say you shouldn’t submerge the scar and just dab it with a wet flannel at first. You can have a bath of shower before removal but you have to cover the scar, you just can’t wet the head as it will delay the healing process…

cropped-ouch.jpg

Cleaning the head was great as it relieved a little of the tightness and you could finally get rid of the iodine, dried blood and the protective spray they put on.  In my case it was very hard to get rid of the dried blood as it was stuck to the hair and wouldn’t loosen.  Trying to loosen the dried blood did work to a certain extent but it also removed some of the hair which made the scar look bigger, I started losing hair around the scar which I assumed was because it was just killed off because of the surgery. Not looking too bad though…

After Washes

Not sure if it is the same with everyone who has head surgery but mine did weep a little and scab over, you have to try your best not to scratch, pick or catch them when washing as it could open up part of the wound. Unfortunately on one occasion I did catch a scab which has now left a bald patch…

Recent Scar

By the end of the first week I had enough of being stuck in so phoned the hospital and asked if it is too early to go on holiday in UK.  This was fine as long as I took care and didn’t fly.  We decided to go camping near a holiday park that our friends were staying at as it would make the holiday better if we also had support should anything happen or be needed.

see subsequent weeks…