Surviving brain surgery after an abcsess

[August1964]

I had a brain abscess in 2012 after going to see my gp and being told I had a virus, still feeling unwell the next weekend I went to out of hours x was told again I had a virus on the Saturday. I remember some of the Sunday but nothing after that, I woke in intensive care on the Friday briefly then woke again on the Sunday, I had no speech x was paralyzed down the right side from my head to my feet. And had no idea what was wrong as no staff would tell me, I was in hospital for 3 months and then at my parents for another month recovering. I had no bone flap because my bone was diseased from the abscess, I can honestly say its the worse experience I've ever had.

In April 2014 I had survey to have a titanium plate fitted which was a painful experience but I knew essential.

This has caused memory loss both long x short term, restricted movement x nerve ending pain down right side x the worse headaches I've ever had! I always have a constant reminder x feel like I'll never get over it.

But I'm here 2 tell my story x my surgeon says I'm very lucky, that man is my hero x I definitely owe him my life!!

Thankyou for reading

Elaine x

[Jamajo]

Hi Elaine, your story sounds very similar to mine. I was experiencing flu like symptoms and excruciating headaches and rang 111 who dispatched an ambulance crew who told me it was viral and to rest! The next day my left eye had swolen shut and my headache unbearable. I reluctantly went to A and E and they started me on a drip and that night I ended up in Intensive care and spent over a month in hospital and further 2 months at my parents getting daily iv drips by nurses. I am still not back to work, my mental health has gone downhill and I am struggling. People are telling me I am so lucky to be alive and look so well and its hard to hear that as I feel I have in some way been punished for something. I cant drive, my appearance has changed. My life isnt how I knew it and I cant accept it. If you or anyone else reading this can help with how to remain positive I would appreciate it.

[August1964 in reply to Jamajo]

Hi I'm so sorry 2 hear that you're struggling x yes we are lucky that's true but at the same time we have to get used to who x how we are now x how this has affected us x our lives. Its 6yrs since my abscess x I've found it very hard to accept I'll not be same again, I can't work coz of my headaches x restrictions with my right side, so now live on disability money which was hard 2 accept, I lost friends coz ppl didn't know how to react to me! So I had a choice either give in x mope every day or push myself, which is what I did, I've realized the hard way that life really is 2 short x you have 2 grab it by the balls x smash it!!

I know I've lost part of me that I won't get back but I make the most of what x who I am now.

Lv Elaine

[Jamajo in reply to August1964]

Hi Elaine, I found alot of people came to visit me and "friends" offered to help however I see less of these "friends" than I did before my brain surgery! Im not exactly fun to be around as Im very angry at how much it has affected my life, but Im at a point when I could do with some help and guidance and Ive never felt more alone! Even family are keeping their distance. It really is "out of sight, out of mind" yet everyday waking up is a constant reminder things are never going to be the same.

[August1964 in reply to Jamajo]

Hi can I ask how old are you x what did you have wrong?

[Jamajo in reply to August1964]

Im 36, I had my birthday in intensive care, i had a brain infection (subdural empyema) and had a craniotomy to drain it. This was April this year.

[August1964 in reply to Jamajo]

Hi have you got a bone flap or has your skull b3en been put back? I ask coz if you've no skull then the pain is very intensified

[Jamajo in reply to August1964]

My skull has been put back. I do have pain around the scar especially the left side and headaches are just the "norm" im constantly popping pills. Ive lost enjoyment for everything. Just feel theres no purpose to being here.

[August1964 in reply to Jamajo]

I'm so sorry you feel his way, I've been where you are now so I know how ur feeling, you need to talk to your GP about counselling x antidepressants? I never thought I'd take them but have been on them since my op, have you got family support?

[Jamajo in reply to August1964]

I am getting help from my GP and have family support and even the local Headway group have been great. I just feel overwhelmed and as if noone really "gets it". If that makes sense?

[August1964 in reply to Jamajo]

Oh yes it makes perfect sense!

I went on Google last night x watched videos of my op, I didn't have the balls to watch it b4 but it helped me 2 understand why I'm still finding things hard, unfortunately there's no quick fix x we have 2 go through the motions b4 we can cum out the other side 😏 but we will x that's what you have to hold onto x

[Jamajo in reply to August1964]

Thank you! Its nice to speak to someone that knows what its like.

[August1964 in reply to Jamajo]

Yes it is! I found this when I was looking at the videos I've not spoken 2 anyone before, where ru from? I'm in caerphilly south wales, I was 1st person in wales 2 have a brain abscess!

[steve55 in reply to August1964]

staying away from wales, youre the 3rd person on here with a tbi hahaha, ill stick with my abi and the mental health issues that came with it.

on a more serious note, i hope things improve for you soon, welcome to our family and i hope you decide to find a monthly headway group close to you.

steve x

[Kirk5w7]

Hi Elaine,

Sorry I didn’t reply last night but for some reason I couldn’t load your post.

I’m so sorry you’ve had such a traumatic time.

More often than not it’s the physical problems we are left with after BI that causes us the most distress. The memory problems are irritating , but I get those neuropathic pains down my arms and into my hands, at their worst I felt like chopping my arms off but I find now the intensity of the pain comes and goes, sometimes disappearing totally 😁

I have also found if I rub tiger balm into my arms it helps so much, I wish I’d found it years ago.

Plus the skin on my back and arms is so sensitive at times, it feels like it’s on fire, I can’t wear thick or heavy clothing so I’m on the lookout this winter for some nice silk jumpers if such things exist, the summer has been a godsend this year, it’s meant I’ve been able to wear lightweight t shirts and vests.

My BI was sustained in 2012 encephalitis not requiring surgery it really must have been horrendous for you I am so glad you are here and able to share your experiences, it is so helpful for others to know of the recovery process and how we managed.

Take care Elaine and come back.

Janet x

[August1964 in reply to Kirk5w7]

Hi Janet thanks 4 reply, the problems I've been left with after my abscess just keep reminding me what I've been through x its so frustrating like I'll never really move on? The worse thing is my headaches x migraines, my surgeon has referred me to a specialist but still waiting, my scar is still painful x still can't sleep on that side, where I was parallarized down right side its still weak x painful, I take a cocktail of drugs x will for life.

But I don't let it get 2 me x ipush myself every day, I've learnt that yes life's 2 short x you have to grab it x smash it!!

Hope you're doing well

Lv Elaine x

[LittleDiddle]

Hi Elaine

I've never left a comment on this site before. Although I've been reading the posts for about a year i've never come across anyone who has had a brain abscess. I had an abscess on my brain in March 2017. After surgery I spent just over a month in hospital having IV antibiotics. I'm 52 years old and recently been forced to take ill health retirement from my job which I could no longer do. I'm currently in the middle of appealing a PIP claim and battling every day life after brain surgery. My GP referred me to a talking therapist to help come to terms with the vast changes in my life. After our meetings I feel better about things for a short period but then get back to reality and my mood changes. I could constantly do with a therapist by my side. I'm now stook at home all day on my own with the TV and Hudl for company. I've had my last physio appointment this week, at least that was somewhere to go to talk to someone. I feel it's going to be a very lonely life going forward. Would love to hear if anyone who's had a brain abscess has made it back to work. I'm off to citizens advice next week to ask for their advice on appealing my PIP claim. No money, no job, not a lot going for me now.

D x

[August1964]

Hi D my experience mirrors yours in lots of ways x you're only person I've spoken 2 with abcsess as well, unfortunately I am also unable to work x lost by pip I contacted age concern who were very good support x took me through whole process x won me my appeal, I would highly recommend them 2you, good luck I hope things go your way!

Did the abscess affect your right side x how? I had part of my skull missing for 22 months now have a plate x my scar is still painful still can't sleep on that side, do you suffer with low pressure headaches? I'm sorry 4 babbling but not been able 2 ask anyone b4, I only cum across this page last night after looking at videos of my op.

Thanks 4 contacting me.

Elaine

[rcarroll in reply to August1964]

Hi! My name is Renee. I’m from Chicago, Illinois. I found this discussion board shortly after my return from a month long stay in the hospital. I too have never posted on this board, but I’ve been reading it for a very long time!

I was rushed to the hospital on Christmas Eve, 2016, I was 54. My surgeon found a large brain abscess on the right side of my brain. He performed burr hole surgery and had to remove a small piece of my skull because it was too infected to replace. I was doing well for a few days after the surgery, however my mental state kept declining and on New Years Eve they had to do a question a mark craniectomy on my left side ( the largest you can get) My surgeon had to remove this bone as well and could not replace it. He found several large abscesses, one of which was subdural. I should be dead… I was given Last Rites the day before, I remember everything about that.

One year later (December 2017) I had cranioplasty surgery to replace the bone defect on the larger bone flap… one month later it had to be removed due to a pseudomonas infection. Needless to say I was devastated. I had been back to my teaching job, and had to leave again after the failed surgery. I did return again full time and I am still teaching… The main reason I am posting this is because I believe this board saved my life. I have been on the pity pot since all of this happened, however I now realize that I am a walking miracle. I have a few small defects due to this surgery, weakness in my left hand and when I get tired I drag my left foot, I also have some short term memory loss, (sticky notes are my best friend)… According to my doctor, these problems should be corrected when the large bone flap is replaced, they went away for a month when it was put back in last December. Every day I am alive, teaching, and breathing is a miracle. After reading your posts and some of the daily struggles so many of you go through each day I feel foolish for hating God and my life. I want to thank everyone and pray you can recover as I have. I am scheduled for another cranioplasty at the end of October. I realize today that I’m an anomaly, killing myself is out of the question, something I had been thinking about for a very long time… Not today, it’s a beautiful day, I thank God I will most likely see my son graduate from college in May, and my daughter from Law School next year. My life IS good and I don’t hate it anymore…. thanks to all you remarkable, strong and lovely people!

[LittleDiddle]

Hi Elaine

Thanks for the recommendation of Age Concern, I will definitely look into that.

My abscess was on the left hand side of my brain (left temporal) and the right hand side of my body is now weak. It wasn't initially after surgery, I'll explain a little further down. They drilled into my skull during surgery the neurosurgeon described it as drilling into a piece of wood. She said I would always have a hole there now. I've got a dent in my head/ skull but no pain in that area. I regularly suffer with headaches/ migraines though. Initially I suffered with concentration, cognitive, memory problems as well as noise sensitivity and headaches. Then a year after brain surgery I was admitted to hospital with symptoms of a stroke. The consultant initially diagnosed a stroke but then changed her mind. She said the symptoms were probably cause by the settling of the outer shell of the abscess. My neurosurgeon did say last year that the abscess would be absorbed back into my body but didn't mention any further symptoms. So I've now got the additional symptoms of weakness down the right hand side of my body. I've recently seen the orthotics and had an insole made for my shoe. I've undergone physiotherapy and am seeing a talking therapist. Last year after recovering I could walk about 7 - 8 miles, I can now only walk for about 15 minutes before I'm exhausted. It's hard adapting to life now, no job, limited mobility, loss of independence, etc. How are you coping?

D x

[August1964 in reply to LittleDiddle]

Hi I was paralyzed down whole right side straight after surgery was in a coma 4 days, I've cum a long way from then x am proud of what I've achieved!

I can now walk without my stick lol x use my right arm. My worse problem is my headaches x migraines x sleepless nights can ware me out, I've lived with this crap for 6yrs after being told I had a virus x feel like my doc at the time really let me down? For the 1st time ever I think why me?

Elaine x

[LittleDiddle in reply to August1964]

Hi Elaine

I'll take inspiration from what you said at the end of your first paragraph - I'm proud of what I've achieved. My neurosurgeon gave me good advice at my appointment 2 months after surgery. She said 'don't look back, just go forward with what you have now'. I know it's not always easy but I try to remember this.

D x

[August1964 in reply to LittleDiddle]

Hi D x yes good 4you cos the only person that can cope with this is you! Don't get me wrong when I cum round I didn't want to be here, I cldnt do anything 4 myself cldnt talk x felt totally useless but I chose 2 fight for my kids coz they had no1 else x believe me I had 2 fight hard 2 get better x I'll never be 100% but hey that's got to be ok!

Off 2 my bed 🛌 now so I'll say gd night 🌚 x what's your name lol

Elaine x

[LittleDiddle in reply to August1964]

It's been good talking to someone in the same boat as me. Goodnight Elaine

Dawn x

[August1964 in reply to LittleDiddle]

Yes same here it's gd talking to you

Gd night Dawn

[Harrys in reply to August1964]

Hi my son had a brain abscess when he was just 14,started with a swollen eye and it all went down hill from there. His now nearly 20 so it messed up all his school days friends education etc.His trying to find a part time job now but with no experience he is finding it very hard . He had a trial at our local restaurant just bar and waiting work but after hour and a half he couldn’t do no more . His headaches are terrible and you know when he has got one too as he completely changes. His been diagnosed with Chronic migraine and Epilepsy even though his last fit was June 2017 and is not on medication for it as it didn’t agree with him. They want him to go on migraine medication but I’ve read so many bad things about it I’m trying different stuff at the mo. One is fever few and B12 also cannabis oil going to try it all for two months and see. I also read on here about frankincense in an oil burner so I do that too. He has just over the counter pain relief at the mo it’s neurofen migraine tablets. I’ve asked if Harry can be referered to see a neurologist so we are waiting for that appointment. So my son definitely knows how you feel he had two cranial operations as the first one didn’t remove all his abscess. And removed the front bit of his forehead but did put it back , although it hasn’t gone back perfect but he has yore a long fringe so you can’t see it . Let me know if you get your headaches sorted , hope you do . Ps we are from Surrey England x

[August1964 in reply to Harrys]

Hi I'm so sorry your son has had 2 go through this so young too, my children know the signs of a bad head cumin x know to leave me alone, I don't like it but nothing I can do I become very quiet x withdrawn x just want my own company.

I now am taking zolmitriptan tablets 4 migraines they are strong x can only take no more than 6 a month after trying other methods, I'm ok on then they make me sleepy, but do help with pain, I take a cocktail of drugs daily 4 headaches x anti fit meds.

I can't work coz my headaches are so random x can cum on at any time x last 4a short time or hrs.

Life is so very different 2 what it was before, I've found it hard to addapt but have no choice x I'm too stubborn to let this beat me lol

Elaine x

[Harrys in reply to August1964]

God everything you have said sounds like my son . They surgested sumertritan May have spelt that wrong . He hasn’t tried it yet . Have you had many fits ? X

[August1964 in reply to Harrys]

Hi not since I've been on my meds x I've had 3

I'm waiting for appointment 2c headache specialist in Heath, I'm from caerphilly south wales. Did your son have any problems with his right side following surgery x does he have titanium plate? Was his speech affected? I had all 3 after my op?

Elaine x

[Harrys]

His left side was slightly week after his operation, his speech is fine and has only had one fit in five years, it’s just the constant pain in his head . No metal plate they put his own piece of skull back x

[August1964 in reply to Harrys]

My abscess was on my left x my right side was completely paralyzed from my head 2 my foot which was twisted I started in a wheelchair, then a summer x a walking stick for over a yr, I had no speech for months, I had no left side skull for 22 months then had a plate, my right side is still weak x I have pain from nerve damage x my scar is painful, still can't sleep on that side x there's nothing my surgeon can do.

X all I had b4 was earache!

Elaine x

[August1964 in reply to August1964]

Meant a zimmer sorry not summer lol x

[Harrys]

Your story sounds a lot worse than my sons and that was pretty bad . I wish you lots of luck that you can start to feel normal and better soon . My son is five years on now , sometimes when his feeling down he wishes he was no longer here . I’ll look forward to hearing if Botox works for head pain , and I’ll be asking Harry’s neurologist when we finally get appointment x

[maggie_piano]

My 17 year old son had a brain abcess after a week with headaches and temperature in February. I called an ambulance after I couldnt wake him up. he was on the operating table on the same day. Everything I have read says abcesses are very rare so I am glad to hear about your stories. He was in a coma for 10 days, hospital for 5 months and had 2 operations Followed by reahab and is still having physio. He has a weakness down his left arm and cannot move his left leg from the knee down. He uses mobility aids and cant walk far. all the information says it will take 2 years to recover. He is on medication and exercises. He can talk/write coherently . Your stories sound a lot worse than ours and if there is anything we can do. Because abcesses are rare - 50% are caused by sinusitus and most take place in the first 20 years of life I think it is worth sharing. My heart goes out to you all hoping you can take time out for yourselves too to keep sane and provide the emotional support both you and your son needs. He has gone back to education. Im 59 and my son is 18 in november and try hard not to cry as I do not know what the future holds for either of us. My husband died in 2011 and have been without my car a week which is killing me. He has changed but I dont know whether he would have done that anyway and I am getting used to that. Hope this helps . There is a high risk of seizures so I have to continue to be vigilant

[Harrys in reply to maggie_piano]

Hi

I don’t often go on this site , how is your son doing now ?My son is pretty much the same , his trying to find a job and isn’t having much luck as it has to be the right environment etc . Does your son suffer with headaches now ?