Brain injury or not?

[Jamajo]

This may sound silly but im confused. I had a brain infection and needed a craniotomy to remove the build up of pus (subdural empyema). I dont think they touched my brain but obviously they cut my skull. I dont feel Im the same person any more. My anxiety and depression is terrible and i have daily headaches and fatigue. My family tell me im not "brain injured" as they didnt do anything to my brain. So am i imagining these symptoms as to look at me i appear "normal" yet i feel like im slower at everything and in a fog most of the time?

[August1964]

Hi i had an abcsess 7yrs ago x also had same op as you, i had a titanium plate put in 5yrs ago, i havent felt the same since, so no you're not imagining it you did actually have brain surgery even if youre brain wasn't touched, i think it would be helpful for you to talk to sum1 maybe ask to see you're consultant x ask questions that are relevant to you x youre health.

Elaine x

[Jamajo in reply to August1964]

Thank you. I know I should feel lucky to still be here, (my family telling me this the most) but I hate my life now. I go to bed before 9pm most nights and still feel completely drained when I wake up. I keep wondering when this will end? Its been a year now.

[Kirk5w7]

In my opinion you are brain injured.

Although they didnt “touch” your brain, they opened up your skull and will have caused an acquired brain injury.

Concussion is a brain injury and is caused by a bang to the head.

Everyone has an opinion about brain injury especially if you “look normal”

Only if you have experienced that fatigue can tou understand it.

We are here for you when frustrations overwhelm.

Janet x

[Jamajo in reply to Kirk5w7]

Thanks Janet. I dont want to be negative but Im finding it hard. The last year has been awful. I keep wondering if Ill ever be normal again as I hate the way I feel every day.

[Kirk5w7 in reply to Jamajo]

Hi again Jamajoin,

I will tell a little of my story, I don’t want you to think that it may take you as long as me.

My brain injury is far more severe, that’s not to trivialise yours believe me, if there’s one thing I’ve learnt is that there are no two brain injuries the same and because we are so individual, then our recoveries will be the same.

I fell victim to PRES 7 years ago, totally out of the blue, I was an active healthy lady of 59 yrs. I will never recover totally but like many I have defied the doom mongers saying I would be in a permanent vegetative state.

It has not been easy getting here, but with the right mindset I am still recovering. I can function very well, walk etc etc but I had to give up work and I still have to be very patient. Some days I can hardly function at all.

I am not telling you this to worry you, but more to tell you you will get there, I feel you have youth on your side, you have to hang on in there keep pushing yourself, I find exercise helps a lot, I walk at least 10,000 steps a day and I can still swim, 40 lengths on a good day. I can no longer drive, run or ride a bike, but hey ho at 66 I don’t hanker after it much now.

I also have reflexology, acupuncture and regular massages. My rehab consultant recommends Indian head massage, but after a craniotomy I would check for yourself.

My point is hang on in there, keep pushing your GP, I was lucky mine is brilliant, and I see my rehab consultant once a year, that helps me touch base and any worries I can talk over with him.

I can get PRES again unfortunately but I watch for the signs and am very hopeful that I will continue to live with my problems.

Take care

Much love

Janet x

[Jamajo in reply to Kirk5w7]

Thank you Janet. I have only just got my driving licence back after a year (its a 3yr medically restricted one) but I am hoping this will help with me being more "me", less reliant on my family and being more independent. Its good you swim, Im overweight and this affects my confidence, although alot of people have recommended excercise to me, I find it difficult with my anxiety leaving the house so at the moment so just going for a walk is hard work. I have a son whom I have to take to school every day, but I do it and that is a huge thing for me right now.

[Danger19]

Hello my lovely,

My heart goes out to you. On the 14th of Jan I simply fell down my stairs. This caused a massive traumatic brain injury, broke the base and right side of my skull, subarachnoid haemorrhage and three blood clots. My family including my two children were told numerous times that I would die. They were then told to find a care home as my disabilities would be extensive. We have experienced our very own miracle as I have no sign of even having had the accident. The only thing I suffer with is a lot of pain where my skull was broken. As a nurse I know this is simply bone healing but I am very wary of painkillers.

I have said to others, so I will say the same to you with the intention of helping. Years ago I was diagnosed with Bipolar. Luckily I am well medicated so it no longer affects me. But I totally understand anxiety and depression and the devastating effect it can have to an individual just trying to get through daily life. I know too well from work how hard it is to get medical help , advice and support. I think that the fact that you are expressing your problems and your feelings says so much positively of you as a person. The situation of not fully understanding your physical symptoms and getting no knowledgeable information from medical professionals can cause devastating effects. Hang in there my lovely. Fight for what you deserve as an individual that is surviving a life changing injury. I wish so much peace, happiness and luck for your future. I am always happy to talk. What I don’t know as a nurse, I can find out from other professionals that I know.

Take care of yourself,

Vikki

[Jamajo]

Thank you Vikki, I appreciate your kind reply. You have been very lucky and it sounds like you are positive and have a supportive family. I was diagnosed with EUPD 6 months before my infection I had control of it with 2 different medications, venlafaxine and mirtazapine. However I had seizures in ICU so I was given Keppra (2000mg daily) and I am still taking this now. There was alot of confusion between the hospitals I was in and my GP and neurologist and my meds were just stopped and noone would prescribe them as they were thought to react with the Keppra so since then I have sunk to a huge depression. It has been restarted at a much lower dose as I said I couldnt go on how I was but it was me who had to make the choice of risking another seizure or carry on feeling suicidal. My GP wants me to wean off the Keppra but my neurologist advises a minimum of 5 years so that again is confusing.

[Danger19]

I really feel for you and your situation. I also take mirtazapine with lamotragine, don’t know where I would be without them. But I used to take Carbamazepine which has an effect with depression and pain but is also used for seizures and Epilepsy. Obviously I am not a Doctor but it may be worth looking at other medications that could help. I’ve always found Doctors are great at managing symptoms they understand and deal with. My argument was that the Neurologist that looked after me had no idea how to manage my Bipolar. So when he insisted I stop my medication I simply refused. I know that because of my job and knowledge people assume it’s easy for me to argue my point. But the fact is I have two children and I cannot risk them having to live with a depressant, it wouldn’t be fair. Maybe look at the positive effects of carbamazepine and other seizures/ anxiety or depression medication. There is away of positivity helping you medically my lovely. Just try and investigate the medication available so you can defend your point when needed. You are in my thoughts and I sincerely wish you positive help and support.

Take care,

Vikki

[WinB]

You need somewhere/someone to talk to about it as after my SAH I thought. Well Win that's it think what songs you want at funeral I was so down but found some people who had the same as me and they knew how I was feeling and not alone in this. You need to get out more and start living as we have been given a 2nd chance. Life is good so go and live it Jamajo ..wish you all the best and cheer up when possible. If you had a problem sounds like they sorted it but see a Doc for yourself and tell him how you feel . Good luck.

[Matt2584]

Hi,

Your family are wrong when they tell you that you do not have a brain injury because your brain was not even touched/injured.

It’s not as simple as it sounds. A brain injury does sound like the brain has to be injured first, not necessarily according to Headway.

My brain wasn’t actually touched but my brain has been injured.

I originally had a brain tumour. The location of the tumour was blocking the flow of Cerebral Spinal Fluid meaning the fluid was growing and growing in my head and causing pressure, squeezing the brain.

I have a VP shunt to relieve the pressure.

That is one injury.

I had a craniotomy as well which is trauma to the brain.

That is another injury.

My tumour calcified which means it is continuously blocking the flow of CSF and if the shunt ever malfunctioned or blocked up then pressure will occur to my brain once again and I will need further surgery... this has happened quite a few times in the past.

These are more reasons for injury to the brain.

I had a cyst/2nd brain tumour which I had radiotherapy on.

Toward the end of the radiotherapy, my walking balance became really really bad and my parents had to hold me upright.

MRI scans were showing that the cyst was not shrinking but more like throbbing/pulsing. Because of this throbbing, the cyst was pressing against the back of my brain/ the cerebellum which is the part of the brain responsible for motor abilities.

Again, this is another injury to the brain.

During one of my operations to fit another shunt due to blockage, I had a haemorrhage and blood got into my shunt leading to a further operation.

A brain haemorrhage is also another injury to the brain.

So as you can tell, I have been through a right rough patch :).

[Cose]

I dont know much about neurology. I am learning alot about it reading on post concussions syndrome and other scientific articles. What I know is whenever it has to do with the brain healing takes time and whatever surgery they would have done would of had a impact on it. Rest and time is important. Im sure you will feel better with rest and time. Be patient. What did they tell you?

Antidepressants help alot if your feeling down. Not too much stimuli ? Take it one day at a time life has so much pleasure’s its easier to bear one day at a time

Xx

[Danger19]

Hello my lovely,

I promise I won’t waffle, sorry that’s the nurse in me. I spoke to a friend of mine who is an excellent medical professional. I promise I did not show your messages or anything. Told him I was just interested.

So anxiety and depression are quite common in individuals who experience seizures or epilepsy. Antidepressants can make such a difference for an individual. Although there is a risk to take antidepressants if you experience seizures but some are better than others. He said Serotonin Reuptakers are the best and safest. Perhaps this information will help, could be a possibility. I wish you so much luck. You are in my thoughts because I know what depression is like. Maybe research what I have said via the internet.

Take care my lovely,

Vikki

[Jamajo]

Thank you very much for that Vikki, I will do some research into that. I have restarted both mirtazapine and venlafaxine albeit in much smaller doses and at my own risk of risking another seizure but I am struggling right now and am thinking of upping the venlafaxine to help me through till I feel a bit better.

[Danger19]

You are so welcome x. With my Bipolar I remember days when I just thought I wouldn’t get through the day. I used to take Venlafaxine and It worked amazingly well. Anything I can do to help you I will do. Any information you want I’ll find out. Anything. Hang in there my love. There is an answer to your situation and together we will find it. Don’t feel alone I’m always happy and ready to help.

Take care,

Vikki

[Hidden]

It's a brain injury, they have been in your skull and messed with the fluid thus affecting the pressure, you will recover but your family are wrong it's a brain injury

[Danger19]

I’m sorry to keep bothering you, I promise if you want me to go away just say. I wanted to tell you my GP, years ago, referred me to the mental health team because I was near suicide. I have an amazing psychiatrist, Dr Suman and I have a mental health nurse who visits twice a month. It’s completely secret and I don’t think I would still be here without them. I am in Chelmsford in Essex are you anywhere close? I could get you referred, nobody would ever know about it. If you’re not, it may be worth talking to your GP, tell them everything and what I have said. You never know it could be worth it. I wish you peace, luck and happiness. Let me know how you get on.

Take care,

Vikki

[Danger19]

Hello my lovely,

I have just read your message to Gymbunny and it really saddens me that you both are having such a bad time. I have also replied to that message and rather than bother you with another long winded message, I would really appreciate if you read what I wrote. I mean exactly the same to you, except the bit about the partner. I am also a single parent. The message to Gymbunny says it all. Please read it, it may help and shows you are not alone, I care about how low you are feeling.

I wish you peace, happiness and luck. You are in my thoughts my love.

Take care,

Vikki

[Jamajo in reply to Danger19]

Hi Vikki, thank you for all your advice. I live in County Durham in the North East so am quite away from Essex! I went to see a GP yesterday and he doubled my venlafaxine dose. I have had a bad back for over a wk now and went to see about that as i can hardly move and he has told me its sciatica and wants me to have an mri asap. Ive had to phone in sick today and that has made my mood lower as i just feel a useless wreck! I thank you for all your kind words, they mean alot.

[Danger19]

Hello my lovely,

I'm so sorry to hear you have sciatica. I know it can cause a lot of pain and numbness or pins and needles in the thigh, lower leg but mostly in the foot of the side affected. I really hope they have given you some decent pain relief and perhaps a muscle relaxant ?

It's a shame we are so far away from each other. I'm really not one of those irritating people who thinks they know everything or can fix everything. It's just that I know from experience how much of a negative impact, feeling a certain way can have to an individual trying to get through daily life, I also know from work how difficult it can be to obtain helpful advice and support from medical professionals.

Just remember when you are feeling down and alone, that you are always in my thoughts.

Take care of you,

Vikki

[Jamajo in reply to Danger19]

Thank you Vikki, I dont find you irritating at all, you have been helpful, friendly and kind, and best of all positive to help me know i may not always feel this way.

Thank you x

[Danger19]

Hello my lovely,

I'm not very technically minded and I can't get the chat to come up on my IPad. It just keeps showing me your name. Please don't think I'm being rude or ignoring you, I'm just a bit useless where technology is concerned!

Take care my lovely,

Vikki