Brain Abcess Craniotomy: Hi I am new to this site... - Headway

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Brain Abcess Craniotomy

gabimou profile image
17 Replies

Hi I am new to this site and have a read of some of the questions and blogs but I don't seem to find any regarding a brain abcess!!! I had my op beginning of April this year followed by a week later another one due to an infection so second was an aspiration.I spent 2 months in hospital(not in the uk) and seem to be doing ok but some days I find it difficult to remain upbeat as what happened to me was a total shock and never expected anything and can't even remember much of what actually happened on the night I was admitted to hospital.If anyone who is reading this knows of any one else who has had a brain abcess I would like to hear their story and how long their recovery was.

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brighton88 profile image
brighton88

from my personal experience of an operation where my skull was opened up to reduce the size of a tumour, all I can advise is that it will take time. I do remember it being one step forward three steps back, to the point where I honestly did not know if I was coming or going. Recovery for me was ongoing, and perhaps still is, as a survivor of a brain tumour, it has been learning to know the new me, as I will never be the person I once was. I do remain up beat, but once in a while.....like now, I have real lows; go with the good feelings and ride the off days, it has got better for me

gabimou profile image
gabimou in reply to brighton88

Thx Brighton88 for the reply reading some of the things on here I see myself as lucky,or very lucky as the drs told me ,for me it was a massive shock and I never expected anything like this a lot I can't remember which friends have been filling the gaps in for me.

The dr's told me after that they originally thought it was a tumour it wasn't till they did the craniotomy that they discovered it was an abcess 6cm x 4 cm.

The thing that scares me the most is that its still there (the bastard I've called it) because of where its situated in the brain they could not take it out only drain it and a week later had an aspiration due to an infection.I was walking a few days after my 1st op so was determined to get up and about after the 2nd op and seeing others on the ward showed me how lucky I was.The first time I have ever been in hospital I have been fortunate in my years to have had good health till now.

brighton88 profile image
brighton88 in reply to gabimou

I think for all of us with brain injuries it often comes as a shock Even though I knew I was going to have the operation in my mind it was a win or loose; I'd survive and all would be back to normal or I'd die and that would be it. No one told me about the recovery and additional complications following radiation. I wonder if I was walked down that road and not told everything, as no one knows how each person will respond, or if I did know what lay ahead for me would I have gone down that road?

I cannot answer that question.

I like your positive approach in giving it a name, I do not think I've ever owned that thing; I did joke when the so called dead tumour grew a friend to keep it company and from that friendship came a cyst. Last year I had an operation via my nose to drain the cyst...now I'm nasal mucus obsessed, and am amazed at what is still coming from my nose. I have to stop myself sometimes calling out 'you'll never guess the size of this one', as my nose continues to give up it's secrets from the operation. sorry I'm doing it again ;-)

After my first operation when I was left unable to walk talk or do anything I'd done before, I began to smoke the happy herb to get round the emotional and physical pain (NOT SOMETHING I WOULD RECOMMEND) I felt I was going mad, after all it was a brain injury, and now people were treating me differently, as though I was not all there. My recovery took me along many roads, dealing with my ongoing tumours all I can do is accept that I am no longer independent and need my consultants and nurse specialists.

Watching Emmerdale and the poorly researched story on the lady with a brain tumour leaves me frustrated, as when I lost my hair it was a physical visible sign that I had lost control of my body and things were happening that I did not want. It is not about wigs and hair doo's, for me it was an emotional thing, and I have to say as a man I was insulted when people would joke that 'it's ok for me', it is not ok....sorry rant over

gabimou profile image
gabimou in reply to brighton88

I believe I have to accept that I will need to make many life changes including maybe coming back to the uk in the near future.Happy herb did make me laugh when i read your reply and like you say specially with a brain injury so I won't try that...lol

Can't say I saw the Emmerdale story but sometimes the soaps don't live in the real world especially concerning some illness's or life situations..

My humour has actually helped me a lot even during my down periods and going back to Emmerdale the hair situation I told my friends that was the least of my problems hair grows back not forgetting that they all expected me to say otherwise.

I am or was always one to do my hair different colours,styles etc so when they shaved one side of my head I got an hairdresser friend to cut the other side which was shoulder length and all knotted while I was still in hospital,this was about a month after the 2nd op, but it was done in the ward toilet so no one could see what was happening.... bet they didn't do that on Emmerdale maybe should write in and tell them this is something that can happen...

brighton88 profile image
brighton88 in reply to gabimou

I like your sense of humour, and of course you are right humour is the best way of dealing with this type of situation. Hair loss from radiation treatment does not always come back as I found; there is an exit bald area at the back of my head, with thinning at the front and alone one side. It was for me a big shock as I took the advice given keeping my head covered at all times, and washing my hair with aquas cream twice a day. Just when I was feeling a little smug that I had not lost any hair at the end of my treatment.... I went home feeling so good after 6 long weeks and now the treatment was all over, got in had a bath and my hair fell out. Even the hair on my belly! I honestly felt sick shaking with fear, this was really happening. I call it an introduction to middle age :-)

Where are you living now?

gabimou profile image
gabimou in reply to brighton88

I live in Cyprus :)

Actually going back to the hair scenario the shaved side is not growing as quick as i thought and my hair is now grey/silver which I am not to pleased about but then again for the time being it saves on expense with the hair dye. Must admit when i looked the next day i was what have i done or words to that effect.

Got to agree with you my saying before all this happened was its an age thing.:)) and welcome to middle age not good when really i feel as those i am younger for my age.

I am sure when you was a teen you thought people that are your age now were old i know i did but as you know the 40's are the new 30's....lol:)))

brighton88 profile image
brighton88 in reply to gabimou

I did find that the hair which grew back was grey/white, and much thinner. As I'm not quite ready for a grey head of hair I have it professionally dyed each month, thus I can say with all honesty that I have never dyed my hair....I pay to have it done :-)

I do try to enjoy middle age, and use my walking stick to point adopting the phrase 'young man/woman' when talking to strangers makes me chuckle inside. I feel that if I have to accept old age early then enjoy it. Yes I take your point about age perception, and remember when I was 16 there was a man at work who was 27...and I thought he was ancient. What is health care like in Cyprus? I had always thought I would spend my days travelling, but now with so many health issues feel anxious at travelling. Back in 2011 we went on a cruise, only to find the ship full of elderly people who objected to a young (ger) man using a walking stick calling out to me that there was nothing wrong with me. But my concern was in accessing medical treatment, the insurance just for the cruise was £160.

in reply to gabimou

I'VE JUST REPLIED TO ANOTHER OF YOUR POSTS & ASKED WHERE YOU ARE. I NOW SEE YOU'RE IN CYPRUS. SORRY I'M A TWIT FOR NOT READING EVERYTHING PROPERLY!

TYPICAL BI BEHAVIOUR!

gabimou profile image
gabimou in reply to

No problems no need to apologise:)

cat3 profile image
cat3

I'm no expert but I wouldn't be surprised if the after effects of varying types of brain trauma were quite similar. I had a Subarachnoid haemorrhage treated with a coil and all I remember is feeling very lightheaded before passing out. Then nothing for three weeks, followed by five weeks rehab.

It IS an unexpected and scary event which is so unbelievable, that it is likely to leave you in a state of Post Traumatic Shock. This is quite common and (if you think about it rationally) not at all surprising. It is an event that you could never have imagined happening to you and it's now a matter of acceptance. If you feel unable to accept it and move on, maybe you need some counselling to put things into better perspective.

It's all about the lack of control and, when it happens, instead of viewing it simply as an unfortunate one-off, it can leave us feeling depressed and vulnerable.

How would you feel about talking things through with a counsellor ?

gabimou profile image
gabimou in reply to cat3

Hi Cat thx for the reply and I understand fully no two people are the same but its nice to actually find a site where people understand what you are going through,friends just don't seem to understand actually let me re word that differently because I have had so much help from friends in the uk and work collegues and I know it must be difficult for them to try and understand even though they do and I find its not fair to keep going on about my strange sensations etc you can get and how one day is good you feel like you could run a marathon(ok not quite but you know what I mean i'm sure)

Also it's my first experience of having to be in hospital I have been fortunate in my years to have had good health till now.

The thing that scares me the most is that they couldn't take the abcess out because of where it\s situated in the brain and it can reacur I've called it "the bastard"...

Also I am not uk based even though I maybe looking at thinking sometime in the future of coming back.

cat3 profile image
cat3

Well,gabimou, That's a pretty appropriate name for a brain abscess which triggered a fairly INappropriate response in me. But I believe my own humour has been invaluable in my recovery............by chasing those dark thoughts away.

I see you've avoided answering the question of counselling ?

gabimou profile image
gabimou in reply to cat3

No cat was not avoiding the question of counselling I seem to have got carried away in my first reply back to you...It is something I have thought about since being discharged from hospital but the country I am living in does not seem to have the same facilities as the uk unfortunately.Also my sense of humour has helped me in many ways not only with friends but with nursing staff and some of the doctors like you say chasing those dark thoughts away.

cat3 profile image
cat3 in reply to gabimou

Where are you, gabimou ? Your picture looks quite exotic. :-)

gabimou profile image
gabimou in reply to cat3

The picture is Santorini Greece but I am in Cyprus:)

cat3 profile image
cat3 in reply to gabimou

OK, well if there are no facilities for you there you'll just have to settle for us to help you. It's all a bit quiet at the moment.........I think some are on holiday at present and one is in hospital.

If you start to feel down or scared you can always put your thoughts into a blog and someone will talk to you. Alternatively, you can message me direct & I'll always get back to you.

You're among friends here, gabimou. xx

Harrys profile image
Harrys

Hi

I haven’t been on this site for a while , my son had a brain abscess 6 years ago too He had just turned 14 at the time . His now 20 and has been left with terrible headaches some days they are really bad has a horrible taste in his mouth and some nights he actually has dug his fingernails into the palm of his hands in his sleep .he had to have two craniotomys to drain the abscess and has a huge scar from ear to ear . His started from a sinus infection and I still think if they had drained it earlier he wouldn’t have ended up with the abscess. How are you now ? What do u do for your headaches Harry has tried some of the medications but really don’t agree with him . Acupuncture didn’t work the nerve block didn’t work either . His been diagnosed with epilepsy but has only ever had two seizures one in the very beginning and another two years ago now . His not on any medication for that either as the side effects were terrible.

Could say loads but I’m doing this in my phone .oh Harry has just started on CBD oil so I’m hoping that’s going to help it’s only day two and it’s going to be quite expensive if it does . Look forward to hearing from you .

Tina x

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