Introduction - Brain Abscess

[m4tthall]

Hi,

Just joined the community after my wife found it useful while I was going through treatment for a brain abscess. I have had a nose about and thought I would share a fairly succinct (spoiler, it was meant to be but hasn’t transpired that way) version of my story; in case it offers any assistance to others.

It was April 23rd 2020, St George’s Day, when I experienced a very peculiar episode where I lost mobility in my right arm and had some odd pulsating sensations. At first I panicked, thinking it might be a stroke, but then realised it was on the wrong side of my body. The episode only lasted about 5 minutes but nevertheless, caused me some anxiety and I subsequently called 111 (UK) to get advice.

After a few more calls, including one to my GP, it was decided I would attend the GP surgery for some blood tests and ECG. It was a little more challenging due to the lockdown with Covid 19 but given the circumstances, it wasn’t really a problem. Anyway, to cut a fairly long story short on this part of the journey, I had several more small episodes, visited hospital and was given the suggestion that the likely cause was a trapped nerve. To be fair to those that were assessing me, I did pull my back a few weeks before and therefore it possibly influenced their diagnosis.

I had then visited a chiropractor to work on my back but in the evening of that day I experienced another episode which was far worse than the others and led to my wife calling an ambulance. The symptoms were similar but, in this instance, the whole side of my body was in spasms, the veins in my right arm, neck and head felt like they would explode, and I felt generally far worse than before. In addition, the episode lasted for over an hour, which included the time waiting for the ambulance, the time they used to assess me and then most of the journey to hospital.

At the hospital I was reviewed, and an MRI scan was booked for a couple of days’ time. This scan showed some abnormal swelling and I was then referred to St George’s hospital in London, where I had another MRI scan (I think, some of this gets a bit hazy) which showed what they believed was a brain abscess, although I am not sure they could rule out a tumour at this point. I then spent a couple of days having a number of tests trying to work out the likely cause, which at the time was possibly from my teeth as I have periodontal disease.

I then took a turn for the worse, which included much worse headaches and a steep decline in mobility in my right arm (I couldn’t pick anything up at this point), and another MRI scan was conducted which showed the abscess had grown rapidly and they needed to book in a burr hole aspiration that day (30th April), which coincidentally coincided with also having three teeth removed. The operation was deemed to be a success and I then spent the next week or so recovering on the ward taking a huge cocktail of antibiotics and other medication, some through a PICC line.

I was then released on the 8th May for my recovery to continue at home with nurses coming around my house once a day to apply the antibiotics through my PICC line. Note, I believe they were keen for me to return home due to the hospital dealing with quite a few coronavirus patients, albeit in other wards, not because I was taking up space (the normal wards had less patients than usual) but for my own safety. This approach was continued with my treatment at home, with my wife picking up the duties to apply the antibiotics intravenously, to reduce my exposure via external nurses.

Anyway, after about a week of being home gradually feeling like I was making some progress I had another seizure. Further to more conversations with medical professionals I ended back up at St Georges A&E and then subsequently into the neuro ward after an MRI showed the abscess hadn’t decreased in accordance with their expectations, along with my liver showing signs of being extremely unhappy with the antibiotics I was taking at the time.

I spent another week in hospital while different drugs were applied and had gone through an episode where I had a high fever for 48 hours. I also needed to spend longer in the hospital, as the new antibiotics needed to be given 3 times a day, something the OPAT nurses could not do at my house. Therefore, my wife needed to go through some additional training in order to be able to take over these duties, which now also included mixing the drugs before applying. All good fun for her no doubt! 😉

Anyway, I did say I’d keep this fairly succinct and have noticed that isn’t the case, although I could certainly write a huge amount more, as this is only a brief glimpse into my journey. I have now been out of the hospital since 19th May and about a week ago have come off the antibiotics, which itself took me a few steps back due to side effects after coming off them.

Nevertheless, comparing where I am to where the medical advice had suggested I would be, I am fairly happy with the progress I have made. There were moments where it was likely I would never regain full mobility in my right arm or at least it would take many months if not years to do so. However, it has substantially improved and although progress now isn’t anywhere near as obvious as it was previously, that isn’t surprising given the huge improvements initially.

The ongoing challenges right now are more relating to:

•The side effects of coming off antibiotics

•Understanding what needs to be done with regard to the anti-seizure drugs I am taking and when/how I will come off of them

•The ongoing effects of having the operation and the brain swelling which is still reducing, such as a constant headache, fatigue, slower mental ability, insomnia, etc.

•The mental strain it has caused in general

It is interesting, as I now look fairly normal and most people wouldn’t be able to tell anything has happened, unless they ran their hand across my head and found the fairly small indent from the burr hole. Therefore, you almost feel like you need to ‘be normal’, even though there are numerous symptoms you’re still suffering from and the subsequent consequences.

Needless to say, I haven’t returned to work just yet and am likely to be off for a few weeks yet but do need to start considering how to get to that end goal, which does introduce a little anxiety on its own. I have started a weekly counselling session through my works private medical insurance, which although a good way to share my general thoughts, hasn’t necessarily helped just yet, I guess I need to give it time.

And therein lies the problem, which I would imagine most people here have experienced. Recovering from surgery (and mine was minor compared to many) takes time, a lot longer than you would like, and it can be quite frustrating. Even as I am merrily typing away this novel, I can feel myself slowly feeling more exhausted than I should do and my headache worsening. However, I must remember where I have come from, with the first day after my aspiration being the most challenging day of my life by far and recognise how far I have come 2 months on. I have just noticed it is 30th June and I had my operation on the 30th April.

Anyway, I will stop writing now, as I can’t imagine many people have bothered to read to the end! If you have, I hope you have found some semblance of value from my monologue

Thanks, and wishing you all the best with whatever challenges you are experiencing. I am more than happy to chat with anyone that feels I may be able to offer any kind of support (or vice-versa).

Matt

Oh, and here is a list of some of the antibiotics

Metronidazole

Ceftriaxone (IV)

Co-trimoxazole

Meropenem

Clindamycin

Levetiracetem/keppra

Dexamethasone

[New_beginning]

Wow, Matt although you may not see or feel it at the moment, you are a lucky man. I have to keep brief (im on a break). Meds will cause unbalance physiologically and psychologically, i would think the seizure meds you are on, will take a while also to find what best suits your brain.

I feel for you and writing this post shows you have good insight. When you have operation you may feel weird coming round, please say to your wife it will be temporary and to stay strong and positive at all times in front of you.

I wish you luck and hope you keep on your amazing recovery and the upcoming operation is successful.

I dont have no answers with your situation,but our world recently turned upside down,and rightfully brought my husband home from hospital peak of virus for safety and recovery.

[twice]

Incredible

You sound so positive and strong on your journey

I think maybe you might just get a little bit frustrated with certain people who think that because you look ok therefore you must be ok , it's my biggest bugbear since my TBI, but we are all different,

Rest as much as you can and don't push your fatigue limits.

I am going to have a cyst removed from my brain soon so I'm not sure if you have made me feel better or worse about it 😃

Take care and stay strong

[m4tthall in reply to twice]

Hey, just checking on how the cyst removal went? Hope it was a resounding success?

[twice in reply to m4tthall]

Hi, hope things are good with you. Had my cyst removed at the end of July and it's like all the progress I've made since my TBI in 2016 has been really set back. But I refuse to give in no matter how hard things are at times. I live on my own so the only person I can annoy is me, so that's a good thing. I am slightly disappointed because the craniotomy really messed my hair up 😄.

[HungryHufflepuff]

I read to the end of your story. Sending you lots of good wishes, and to your wife, because I think those who care for us and who have to suddenly get used to the new us, have equally as hard a journey albeit in a different way. Two months is not a long time and you've progressed a lot in that time. Wishing you all the best.

[cat3]

Much further to go M4 but looks like you have what it takes to see it through. Your mention of 'a few weeks' before returning to work might need serious reconsideration though.

The fatigue, memory issues and emotional instability (amongst other after-effects) will need management and some adaptations along the way. Returning to work too soon so often proves overwhelming ; an injured brain doesn't respond well to 'Mind-over-matter'. Many of us here (with all the will in the world) have tried and been defeated !

All best wishes for your continuing progress and good luck with the counselling. Stay in touch....

Take care, Cat x

[m4tthall]

The current challenge is the long tail to the recovery process. I guess I am being a little impatient given I only had the surgery 2 1/2 months ago but, and I assume this is common, there was fairly rapid improvement at the beginning, as you are coming from a place where there is a lot to recover. However, now it feels like every day there isn't much improvement, although I recognise I am in a hugely better state than I was.

In addition, for some reason over the last few weeks I have been suffering from issues with my right ear, almost like having an ear infection. However, after seeing the GP, he seemed to think it was just congested. After returning the following week I was then put on a short course of antibiotics to see if that would help. At the time of writing it has almost been a week of the antibiotics and improvement is negligible, so I may need to go back to the GP once I have completed the course. Trying to be optimistic about it, I have a couple of days left so it might resolve then.

However, the point being is this, added to the side/after effects of the illness/drugs has just put me a step or two back, which is very frustrating. Again though, compared to some people's situations I need to recognise that things could be a lot worse. Sometimes that doesn't necessarily help though.

cat3 - yes, a few weeks was possible too optimistic, I think my current goal is the beginning of September

HungryHufflepuff - you're not wrong, I am not sure where I would have been without the support of my family. Although this is less intensive now, knowing you have people around that care and can support if/when necessary is unsurprisingly a great comfort.

twice - hope your procedure is/was a success

New_beginning - not sure how lucky I feel right now I hope your world has become a little less challenging

Thanks for your replies.

Matt

[twice in reply to m4tthall]

Good to read your reply and hope the antibiotics do work for you, when I had my TBI I thought I would be completely recovered and back to work within a few weeks but that's not the reality unfortunately. That was over 3 years ago for me and still trying hard every day.

I am back to hospital on Monday for cyst removal on Tuesday.

Try not to think of yourself as lucky because like you said it doesn't feel lucky at times.

Take care.

[New_beginning]

I really hope you are doing ok with your recovery and keep staying strong. Your post has touched my heart with your openness and great insight. Im also thinking of your wife and hope she is managing best she can.

Best wishes Matt and Wife.

[m4tthall in reply to New_beginning]

Thanks New_beginning . The last few weeks have been very frustrating, as my ear continues to have issues. With numerous visits to the GP and a couple of doses of different antibiotics to add to the extensive list I had with the brain abscess, I feel like I have had more than my fair share

It's a challenge trying to recover as it is without the ear problems exasperating things but I need to keep reminding myself things could be a lot worse. Some days that is harder than others and I find myself feeling low and perhaps not responding to those around me as positively as I could be. Not that I am particularly bad, just not in a happy mood and I feel guilty when I feel low and people can see that I am not in the right place.

I do hope your situation has been improving.

Matt

[New_beginning in reply to m4tthall]

I wonder if the operations have damaged a nerve. I would book telephone app with neuro surgeon possibly, no offense to GPs but its totally out there remit with Neurological. But ask GP to make ENT referral. Im going down that path as it appears my husband having issues with left ear, constant high pitch sound, think fractures fused on nerve, i dont know.

Things are improving that im supporting my husband with his independence. Hoping another 2months will see it nurture.

Ive been doing CBT for myself and husband, its helping with thinking positive and putting positive goals.

It will be ok eventyally Matt, will take time, im beginning to hate the phase its early days myself now being 4mths in, but observing other posts, it truely is early days but keep pushing forward.

[Jamajo]

Hi Matt, I also had a brain abcess, they called it a subdural empyema, and had a very similar experience to you.

I was on several antibiotics that you mentioned and also had a PICC line that needed district nurses to administer for 6 weeks after a 4 week stay in hospital.

I also look "normal" and sometimes wish I didnt as people expect alot more of me.

I am taking Keppra also for seizures but am suffering with bad anxiety and am finding it extremely hard to manage after returning to work.

This all happened in March/April 2018.

I am hoping to wean off the Keppra although I am very frightened at the thought of a seizure but I cant bear my life as it is right now.

I also experience bad headaches daily, to which codydramol is the only med that takes the edge off for me but I am finding the huge cocktail of drugs I am taking makes my balance uneasy which is hard to hide at work.

I wish you well and hope you manage to get back to work soon. I would recommend walking extra steps daily rather than running, I get a bit anxious that would increase headaches.

Take care.

Lisa

[m4tthall in reply to Jamajo]

Hi Lisa,

Thanks for replying with your story, which I have subsequently looked up historically on this board. It seems you have been through a rough time and although it sounds like you are still having difficulties, I hope the challenges are becoming easier over time.

Obviously people will be impacted differently but I can certainly see a lot of similarities. I am really unsure right now whether the 1000mg Keppra dosage I'm taking twice a day is having an adverse impact or whether it's simply recovering from the swelling, operation and subsequent scarring. I guess I have to wait until my assessment in November time to determine next steps with regard to that. I can empathize with the anxiety you have with regard to potential seizures, that is something that is at the back of my mind.

In the meantime I am trying to return to as much normality as I can. I have resumed work this week, although in an extremely limited capacity i.e. a few mornings only. I have found meetings with people at work to be the most challenging in my experience so far. I can be in the meeting initially, feeling perfectly fine, but slowly feel fogginess and headaches come on the longer it goes on. It's early days still and I am hoping this is something that will subside as time goes on but I can't do much right now other than take a step at the time and attempt to not worry.

My headaches have subsided and my analogy now is more like wearing contact lenses. You know it is constantly there but can forget about it most of the time. I do occasionally have them increase in intensity but luckily for me, paracetamol appears to be sufficient. I don't have many more drugs, from your response I assume you are on a lot more?

Thanks again for your reply.

Matt

[m4tthall]

So, I have started reducing the Keppra over the last week. From the 2000mg per day the plan is to reduce by 500 every two weeks. It undoubtedly brings some anxiety but I can only look upon it as a positive step, as if I can manage to get to the end without any seizure I can at least start to work out what impact, or not, it is having to my ongoing symptoms.

[New_beginning in reply to m4tthall]

This is amazing you really have done so well and monitored everything with your recovery, which i have read again from your first post. Please be mindful and flexible of 2wks timescale with uncertain times and GP on hand with med review.

I Wish you anď your wife a lovely Christmas and lets hope 2021 becomes brighter from such a rotten year.

[m4tthall in reply to New_beginning]

Thanks NB, much appreciated that you have been taking an interest. I am trying to be as positive as I can. However, I will admit this can be extremely draining on its own and I find myself naturally retreating into despair sometimes, especially when one of those pesky symptoms decides to make a reappearance.

I know you have been having a very difficult time yourself and hope you can manage to enjoy Christmas as much as possible x