Brain Abscess

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I had a brain abscess 7 years ago and it has left me with awful health problems, it made me have a sroke, the doctors all said I was very lucky to be alive. The pain was the worst pain I have ever had, and I still have nightmares about it, and recently I have been diagnosed with ME and the consultant said that the brain abscess has caused it. Is there anyone out there who has had a brain abscess, as I don't know anyone who has.

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  • Posted

    I can't believe i have found someone who has had a brain abcess,but mine is more recent in just over a year ago.No one tells you what to expect and as good as friends are they really don't realise how eveyday i feel something and it drives me mad.I have also only 4 months ago had a radical mastoidectomy so i am getting all kinds of feelings and again dr's are casual and say to be expected,

     

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    • Posted

      At long last ! Another one. I had the same thing back in 2001 when the technology is not quite as it is now. I was exteremely fortunate? in that I was airlifted to Oxford and operated on within hours. I did spend two months in Oxford & another month at the Royal Berkshire. After that weekly sessions with a specialist to help me remember names together with frequent return visits.

      I was a mess for about nine months but financial pressure 15 months later and I returned to work. Everything fine until about 7-8 years after my balance problems returned and stopped driving even after visits to Movement Disorder specialists. I have also had further problems in that I have Baker cysts behind both legs & have now been advised I have peripheral neuropathy as I can no longer feel my toes. Apart from that & the 23 pills I take a day things (18 painkillers & 4 for possible fits, 1 for choleterol) things are fine. We are a rare breed - only about 500 cases a year with 50% survival, think yourself lucky you are there to moan as at the moment no-one understands or seems to care. Keep in touch.

      Dougal

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    • Posted

      Hi Dougal

      i never really expected anyone to reply to tell the truth but nice surprise especially to hear your story.I have now just started taking seroxat that my gp recommended as i was getting anxious and constantly thinking it was going to return.Like you,the doctors kept saying to me "you are very lucky" and about a week after my craniotomy i had an infection so had an aspiration where they drilled 2 holes and inserted a tube which was drained and inserted with antibiotics daily(sounds worse than it is).They still don't know how the brain was caused even though i had constant ear infections and weepage for years,hence the radical mastoidectomy,can't say myself if its really that especially with the weird feelings i get sometimes and how i look fine anyone looking at me.My neuro dr actually told me you know you will never be normal again,which i told him i wasn't in the first place....lol(humour helps).I feel for you with all yr meds you are on luckily for the time being only on seroxat and the odd painkiller but weird feelings on my right side where the crainotomy and mastoidectomy is.No one really understands and alot of people i work with i can't be arsed to discuss it with them all i seem to get when i speak with a few its stress!!! i am like thinking stfu u have no idea.By the way i am far from being a hyperchondriac not like some people i work with who are whinging with  the slightest ache or pain i'm thinking shut upppppp!!!Just to let you know i am not UK based i live in Cyprus

      gabygaby

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  • Posted

    Glad ? to hear of someone  else who has suffered. My brain abscess occured in 2001 when things were still somewhat unknown about the problem. I have learnt how rare the problem is and have to take 23 pills a day, most of which are painkillers. I have been through ENT Depts (having my mastoid removed at the same time), movement disorder clinic, pain management clinic plus returns to Oxford for unknwon reasons. (Oxford carried out the surgery & were exceptional) so I am told. I have had problems in trying to find any similar patients as similar to you I have had (aparently) a mild stroke but I still have to work, although I have had to stop driving as my balance is that bad.

     Keep in touch, I've survived so far, miserable as sin according to my by missus but like you have down times. No one seems to appreciate let alone understand (my GP has never had another similar case & he is as old as me!) so its just strugggle but at least I have managed to find a similar after all this time

    Best wishes.....Dougal

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  • Posted

    At long last ! Another one. I had the same thing back in 2001 when the technology is not quite as it is now. I was exteremely fortunate? in that I was airlifted to Oxford and operated on within hours. I did spend two months in Oxford & another month at the Royal Berkshire. After that weekly sessions with a specialist to help me remember names together with frequent return visits.

    I was a mess for about nine months but financial pressure 15 months later and I returned to work. Everything fine until about 7-8 years after my balance problems returned and stopped driving even after visits to Movement Disorder specialists. I have also had further problems in that I have Baker cysts behind both legs & have now been advised I have peripheral neuropathy as I can no longer feel my toes. Apart from that & the 23 pills I take a day things (18 painkillers & 4 for possible fits, 1 for choleterol) things are fine. We are a rare breed - only about 500 cases a year with 50% survival, think yourself lucky you are there to moan as at the moment no-one understands or seems to care. Keep in touch.

    Dougal

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  • Posted

    At long last ! Another one. I had the same thing back in 2001 when the technology is not quite as it is now. I was exteremely fortunate? in that I was airlifted to Oxford and operated on within hours. I did spend two months in Oxford & another month at the Royal Berkshire. After that weekly sessions with a specialist to help me remember names together with frequent return visits.

    I was a mess for about nine months but financial pressure 15 months later and I returned to work. Everything fine until about 7-8 years after my balance problems returned and stopped driving even after visits to Movement Disorder specialists. I have also had further problems in that I have Baker cysts behind both legs & have now been advised I have peripheral neuropathy as I can no longer feel my toes. Apart from that & the 23 pills I take a day things (18 painkillers & 4 for possible fits, 1 for choleterol) things are fine. We are a rare breed - only about 500 cases a year with 50% survival, think yourself lucky you are there to moan as at the moment no-one understands or seems to care. Keep in touch.

    Dougal

    Report
  • Posted

    At long last ! Another one. I had the same thing back in 2001 when the technology is not quite as it is now. I was exteremely fortunate? in that I was airlifted to Oxford and operated on within hours. I did spend two months in Oxford & another month at the Royal Berkshire. After that weekly sessions with a specialist to help me remember names together with frequent return visits.

    I was a mess for about nine months but financial pressure 15 months later and I returned to work. Everything fine until about 7-8 years after my balance problems returned and stopped driving even after visits to Movement Disorder specialists. I have also had further problems in that I have Baker cysts behind both legs & have now been advised I have peripheral neuropathy as I can no longer feel my toes. Apart from that & the 23 pills I take a day things (18 painkillers & 4 for possible fits, 1 for choleterol) things are fine. We are a rare breed - only about 500 cases a year with 50% survival, think yourself lucky you are there to moan as at the moment no-one understands or seems to care. Keep in touch.

    Dougal

    Report
  • Posted

    At long last ! Another one. I had the same thing back in 2001 when the technology is not quite as it is now. I was exteremely fortunate? in that I was airlifted to Oxford and operated on within hours. I did spend two months in Oxford & another month at the Royal Berkshire. After that weekly sessions with a specialist to help me remember names together with frequent return visits.

    I was a mess for about nine months but financial pressure 15 months later and I returned to work. Everything fine until about 7-8 years after my balance problems returned and stopped driving even after visits to Movement Disorder specialists. I have also had further problems in that I have Baker cysts behind both legs & have now been advised I have peripheral neuropathy as I can no longer feel my toes. Apart from that & the 23 pills I take a day things (18 painkillers & 4 for possible fits, 1 for choleterol) things are fine. We are a rare breed - only about 500 cases a year with 50% survival, think yourself lucky you are there to moan as at the moment no-one understands or seems to care. Keep in touch.

    Dougal

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  • Posted

    Apologies for the repeats !!!!.........having a hole drilled in your head has this effect..............Plus computer troubles
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  • Posted

    I had a brain abscess in 1978 when I was 20 months old, I don't remember it but my family have told me all about it.  Mine was caused by mastoiditis.  I had surgery for the ear infection and the surgeon found the brain abscess.  I had a second operation two days later to get rid of the abscess, I don't know if it was drained or excised.  I think I must have been lucky I was so young, I was in hospital less than three weeks, my mum says it was two and a half weeks but my dad thinks it was only a week and a half.  Apparently I did not need any painkillers after the second operation.  I was diagnosed with developmental delay as a child but gradually caught up with my peers over several years.  I do think that I have some difficulties with concentration and my short term memory is rubbish but I have no idea if this is brain damage or just me.  My ear is very sensitive and often painful, and I have had several more ear infections the most recent being less than a year ago but they have all cleared up with anti biotics.  I have never met anyone who has had mastoiditis or a brain abscess (or at least not that I knew about) so it is interesting to compare experiences.
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  • Posted

    I suffered multiple brain abscesses in 2012. I presented with symptoms of a bacterial blood infection. Generally feeling unwell and no energy, I couldn't walk properly and needed a walker to go to the toilet and shower whist in hospital. I just assumed that was because the infection had really knocked me around. I then developed an infection in my shoulder joint and bilateral pneumonia. I was on antibiotics and finally ready to leave hospital, when a physio asked me to walk around the ward with her. She noted that I had stroke like symptoms and was dragging my left leg. She also noted that my face had drooped. I had an emergency ct brain, and the doctors told me that I had several areas that looked like I had multiple strokes. I was devestated. A specialist was not convinced of the ct brain result and ordered an MRI. This confirmed that I had multiple abscesses throughout my brain, from the cerebellum to the vertex. When I saw my scan I was shocked. There was large areas of swelling , white areas,  everywhere.. The swelling was pushing my brain over to one side. Strangely though. I never had a headache the whole admission. I do have type1 diabetes, and was told that had made diagnosis difficult. I couldn't believe after weeks in hospital, not one doctor had noticed my facial droop. A friend who had visited me early in the admission asked me if the doctors thought I had had a stroke as she could see my facial droop. At that stage my answer was no,she was shocked to find out what had occurred.  I still have lots of trouble with my balance, my eyesight, concentration and mental clarity. I have managed to get back to work 3 days a week, but my specialist has told me not to push myself. He explained that have had an acquired brain injury (ABI) and have found it much easier to deal with being physically and mentally different to before the abscesses, now that I have researched about the condition. I know I won't go back to how I was, but after checking the stats, just feel really really pleased that I actually survived what is an often fatal episode. 

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    • Posted

      My 17 year old son is going through this. after 1 month. Very short growth period- 14 days and after 1 month he is luckyto be alive and he is improving. Your account is very helpful is telling me what to expect and is reassuring. it is rare and every case i
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  • Posted

    It is nice to finally know of others who have experienced brain abscesses. I have spent the last few months looking for answers as to why my healthy 11 year old daughter had a large brain abscess. The first doctor said it was a migraine and sent us home. 2 days later at another doctor’s appt, a doctor asked her to touch her chin to her chest. She couldn’t so we were sent to the ER. CT showed a very large abscess over her right eye with brain shifting. Emergency craniotomy was done, and she is good as new. Maybe it is her age that prevented her from experiencing complications. The ID doctor said the bacteria in the abscess was Eikenella which is a bacteria that we all have in our mouths. They believe the infection came from her sinuses but she has never had sinus problems before. She did just have braces put on so I’m curious about that. ID doctor said this is very rare. Just a case of bad luck. Hard to accept as a mom bc I want answers. I worry about it reoccurring and wonder what made her susceptible to a brain abscess. 
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