Are people always left with health issues after meningitis ?

[sweetknits]

My mum had pneumococcal meningitis in the new year (2012) . She was on life support for 5 days and high dependancy for a week after that , but gradually with help and determination she is almost back to her pre-meningitis self although she is now deaf in one ear and sometimes feels as though she is almost drunk when she walks or gets up fast . Shes done wonderful as we really expected to lose her . I was just wondering if people are always left with some disability or after effect from meningitis as we don't know anyone personally who has suffered from meningitis before . Thanks .

[stevie1961]

Hi Sweetknits,

Sorry to hear about your mothers ilness, I myself suffered bacterial meningitis and pneumonia.

I was on live support for just over 2 weeks.

The drunken feeling is exactly as I felt when I first came home. That wore off after a few weeks but the meningitis has left me feeling so weak, poor memory and the attention span of a gnat. I have been left with vertigo which is very disibilitating.

How was your Mams follow-up, I and others have said on here that the NHS isn't geered up for Adults with meningitis. Make sure your mother gets her eyes and ears checked, as I was just left out of hospital with no referals whatsoever, my wife had to chase everything up.

I'd reccomend contacting the meningitis trust, they were an absolutely great help and source of advice. they really put my mind at rest. Your mother probably would have the same questions as I did. My wife to thought that she was going to loose me and has had councelling from the meningitis Trust.

Its been 6 months since I contracted it and I feel a lot better, but not there yet, the support of people here will help though.

Wishing you all the best,

Steve

[MNClaireD Partner Meningitis Now]

Hi

I am sorry to hear that your mum has been seriously ill with pneumococcal meningitis, however, glad to read that she is now making good progress.

Most people make a good recovery from meningitis, and not everyone will be left with a disability or after-effects. Around 15% of those surviving meningitis will be left with severe after-effects such as brain damage, hearing and sight loss, and where septicaemia has occurred, limb loss and scarring.

Many people will be left with “invisible” after-effects such as memory loss, tiredness, emotional problems, depression and recurring headaches. As mentioned before, follow-up is important. Anyone who has suffered from bacterial meningitis should also be offered a hearing test.

Remember the Meningitis Trust is here to help anyone affected by meningitis. Do contact us if you we can be of help in any way (helpline 0808 80 10 388 or email [e-mail] )

Claire

Meningitis Trust

[StrawberryCream in reply to MNClaireD]

Hi Claire. Your response to Sweetknits I find extremely helpful as succintly explains the post bactrerial meningitis facts. I wish I had received this message a while back as it explains what I am now having to face up too with what are most likely now to be permanent after effects. I am gradually finding out that I am one of the % that is left with problematic after effects and maybe they are more severe than I yet want to recognise. I have been told that my GCS, length of time I was unconscious on a ventolator, retrograde and post traumatic amnesia means I suffered a severe brain injury. I now suffer with probably epilepsy if I don't remain on anti convulsants, some hearing (not checked until over a year post discharge) and sight loss, extreme mental exhaustion (as now planning, decision making, motivating etc is so effortful), balance problems, memory problems, depression and emotional problems, sensitivity to noise and things that spin etc. I hope with time (although it is now 15 months on) some will continue to improve but I have just this week been told by the Neuro Otology Clinic that my balance problems are not going to fully recover (I still fall and bounce of walls and doors) and the Neurologist a while ago has said neither will my frontal lobe brain damage regenerate or compensate. I have gone from being a Professional Nurse who was successful in her 28 year career and then successful foster carer for 5 years, to someone who struggles to make decisions to eg pack a case or what to buy at a supermarket. Yet single handedly I have had to resume full parenting responsibility for my 6 year old son. Life since being struck by Meningitis has been very hard and a major struggle. I do have counselling funded by the Meningitis Trust which hopefully will help me move from wanting the old me back to find new purpose in my life and to accept the new me with her limitations. I guess it is a process like a bereavement that I have to go through and something we will go through at different speeds.

[paul1224]

Hi Sweetknits,

sorry to hear about mom

i had mine nov 2003

i still fall over need a chair or crutches to get around

i was told at the time time my balance was so bad i would not walk again

but dont believe every thing you are told or read i kept at it and got out of a perm-ant chair on to crutches i still fall over 1 month ago i fell over and broke 3 ribs but i would rather have that than be pushed about

i am still having physio and hypnotherapy 8 years on

so just take it one step at time and best of luck to you

[daffodil]

Hi all,

It is encouraging to hear from Paul ,thathe has made improvements even as long as 8 yrs on.Im coming up for 5 years post bacterial meningitis and septicaemia and I was told after a years failed vestibular rehab that my balance and vertigo would never improve as the rehab had for some unexplained reason failed for me.Being told that sent me into a big depression and if it hadnt been for the Trust and counselling,I think Id have given up!

As you say Paul - we shouldnt always believe everything doctors say .Read jonads blog -it will encourage you all.He is about to do a triathalon 10yrs post Meningitis.

Claire has answered you question very nicely,so wont repeat info.

This forum and the TrUST other services -counselling,1-2-1 buddy will hopefully be a great support to you and your mum and any other family members who need some help.It is so much a lifeline to many of us,as followup seems rare,unless you are left with very severe and obvious after effects.

[vasco]

Hi sweetknits

Sorry to hear your mum's experience. I had meningitis and septicaemia last October 2011 and 11months on I am still suffering heavily from the after effects. I loss my hearing on both ears and had to get cochlear implant devices. These devices helped to connect me back to the world of sound after 8 months of complete deafness. I also loss the soles of my feet and 7 toes in both feet. I underwent very traumatic 13 sessions of operations. I underwent feet reconstruction operations on both,where my two thighs were split open and muscles were taken to replace the dead/necrotic tissues. I also loss my skins on both thighs on different skin grafts. I had pericarditis where a hole was created right through my chest to the heart to drain excessive fluids from around my heart sac. I stayed 9 months all together in hospital and rehab only to come back home and realise that my apartment has been broken into by some burglars. They took away all my electronics and bank cards. They took my car key and opened and ransacked my car. I got told by estate agency that runs my building that I would not be allowed back to the building because of health and safety reasons. I was put in care home since I was discharged. All these coupled with the emotional, and psychological effects. The worst perhaps is the fact that I don't have my family around here. So went through all these on my own save a couple of friends who drop in to say hi. I found this site quite helpful cos here you read stories of people who went through same thing as you.

Your mum would be fine with time. Fingers cross

[Tucker71 in reply to vasco]

Hi Vasco, I sent you a message couple days ago? Ur such a strong buy and doing so well u certainly have had a bad experience, may I ask u about ur hearing implants? As I was left deaf in both ears I caught bacterial menigitis beginning of October, as like a lot of people I was in intensive care etc, but I'm really really struggle with the tinnitus, it's slowl been getting worse, but the last couple of days the tone has changed from say 1 ringing bell noise to now 3/4 ringing noise, I can't even hear my self think, and I really hope u don't mind me asking ur advice but as ur so strong and trying ur best I reall would apreciate ur advice.

I'm scared im going to stay like this, I won't go on as we havnt even chatted before, and I fee a bit intrusive.

So if u could give me any tips, I've got my hearing test on Wednesday,mand ent in 17th.

Thanx Vasco

[vasco in reply to Tucker71]

Hi tucker71

I have replied to your message. However, I must admit that my implants are life saver to me. Though they aren't perfect but have offered me the opportunity to hear some sound again. The implant helps to mask the tinnitus whenever it's on. So I would say, I'm doing brilliantly with my implants.

Don't be scared, you will be fine. You are stronger than you think. As long as you survived the horrible meningitis, you are a strong person. Please try not to be depressed about it. If life throws lemon to you try use it make a lemonade. My thoughts are with you in this trying moment.

Vasco

[Tucker71 in reply to vasco]

Hiya Vasco,no u havnt depressed me more, it's better to be honest then build ones hopes up then have to be disappointed.

I must say u r certainly educated when it comes to this illness, u seem to no more than any of the doctors I've seen,wen I was in hospital they the nurses didn't beli I could hear for some reason, why someone would make that up is beyond me....and I'll add this as well, u seem to be such a strong character, as u have had a rough ride but take everything in ur stride. Can I ask wat was u doing before this happened? As in work wise? ...and r u thinking of going back to work..

I'm kinda feeling bit list at the moment, like I've lost my independence, I can't drive can't even cross the road as of balance and hearing, speaking of hearing, since Saturday softer washing my hair & bending over bath for 10 mins my tinnitus has got worse, before it was like 1 bell ringing now I've got the bad pressure & it just seems louder, I was so upset last nite I went A & E, for all the good it done, bloody nurse said can't he u here uve got to go to original hospital u was in as we're not accipt to help with meningitis, but I've not come for that I said.....I just need something to help with this noise?? Sorry.....can't help....

Anyway I'm rabbling on, I'll sign of, once again thanx for all the advice it's much appreciated and took on board.

Claire.

[Tucker71 in reply to vasco]

Hi Vasco, I'm sorry for bothering u again but I just wanted to run something by u, I no ur not a doctor but u do seem to no a fair bit, plus uv got experience with this stuff, so here goes, yesterday I went for hearing test and she just confirmed I have bad hearing, I asked her if u could give me a rough idea of wat hearing I have left she said about 2% ...or 20% out of hundred, anyway she asked me do I want hearing aids? I said well yeah but I reall want the cochlear implants, or just the one implant as I've read u only get one on the nhs.....so I sa will it ruin my chances of getting the implant? She said I shou think so but wasn't 100% sure,........so I'm askin u wen I go to my ent appointment on the 17th and ask can I have implants, will they say no as I've got hearing aids.......no body explains anything and I can't hear them so I'm all over the place.

And to make it even worse the lady said there gonna be quite large (aids) as I've got hardley no hearing, ....

Once again IDE apreciate any advice.

Claire.

Ps, hope ur well today, .

[vasco in reply to Tucker71]

Hi tucker71

Sorry to hear that you have really bad hearing. The truth is, pending on the level of residual hearing you got left will determine whether you are a good candidate for implant or hearing aid. If you still got some meaningful level of hearing, ent would recommend hearing aid to amplify sounds directly to your cochlea. But if the level is 2% that means it's very very bad. In that case I guess cochlear implant is better for you. However whichever line of action that would be taken will be determined by the result of your hearing test. May I ask if the same audiology dept where u went for hearing test would be where you gonna see the ent? If yes, then your test result would have been passed over to the ent doctor for review. If no, you will be required to go for some more tests including MRI scan of the inner ear to ascertain the extent of damages to your cochlear and vestibulo cochlear nerves. That would inform the ent the conditions of your ear. You wouldn't demand for cochlear implant if you have not met certain criteria for it. Secondly. You could get bilateral implantation if both ears are bad or one implant in the worst ear and hearing aid in the other. Then again, I would suggest you get hearing aid first if you still got some residual hearing because once you got the implant all left over residual hearing would go completely without any chances of hearing again without cochlear implant.

I wish you all the best in whichever choice you make. But please be as frank as possible. Do not exaggerate or undermine your condition. That would help to determine the best plan of action for you. Cheers

Vasco

[iaveadream22]

Hi, I fully understand as I have had meninigits 4 times in my life time believe it or not and sadly 2 years ago when i was 50 I had my 4th attack which left me with significant after effects , Yes your right to say you were grateful your mum survived as alot of suffers unfortunately die or left with horrible damage to limbs and brain , etc.

I also suffer with daily balance issues which can only be descibed as appearing drunk , which is rather embarrashing lol. As my wife says people must think im permanently drunk when I hardly drink these days. I also have memory loss which is not nice as some times i will forget simple details such as what fruit im holding , when 20 seconds later it will come back to me . I also terrible with names . lol Yes same as your mum hearing loss is a pain, and makes listeniing harder and i guess can misinterpretate what is being conveyed ,

The reason I had 4 attacks is related to a Immunity defficiency issue and now take life long medication.

I still occasionally see specialist but to be honest the after care in this country is Not great and at times I can feel isolated and not understood for the problems I encounter daily , eventhough its important to be positive

Give my kindest regards to your mum and feel happy to keep in communication

Keith

[Bonkitty]

Dear Iaveadream 22 Keith,

I also have terrible vertigo / balance problems post meningitis which is now being corrected by an excellent Chiropractor. He has worked on a bone in the roof of my mouth and it was amazing as he straightened my imbalance, also worked on my neck as the tension from the meninges popped the bones in my neck out of alignment and this has helped the vertigo too. It might be worth getting checked out.

I am also finding virgin coconut oil to be helpful, it is apparently good for nourishing the membranes and brain problems.

I thought these may be helpful to share with you.

Regards

Catherine

[Stace30 in reply to Bonkitty]

Hi bonkitty

Dont know if your still on here

But im recovering after a bad casevof bacterial meningitis and today the roof of my mouth has dropped so its rounded down instead of inwards is this what you had? Or do uno wot it is?

Im struggling to drink now