Were you given information about recovery f... - Meningitis Now

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Were you given information about recovery following your meningitis experience by your doctor or the hospital? (verbally or written)

MNClaireDMNClaireDAdministrator112 Voters

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I was in an "altered state of consciousness" on both admissions (found on floor; folks called ambulance) so I had no idea what was going on when I woke up days/weeks later. Wasn't told diagnosis either time. On first admission, when I asked nurse what had happened, she said doctor would tell me; doctor said "you've been a very sick little lady." Someone said I had had a seizure. No discharge instructions, just a med list and some general info ("if you begin to feel worse, go to ER"). On second admission, I was swamped by social workers at discharge, but, again, no information/instructions. One of the hospital doctors said my primary care physician would discuss "everything" with me (note: neither PCP nor neurologist discussed anything). Had to wait until admissions were uploaded to find out anything. Still no info re: recovery. Both BM and ME were treated as acute events that happened and are now over.

I was given no information or advice whatsoever on leaving hospital. In fact the doctors still had no idea what was wrong with me and what I was suffering from. Initially I was told it was a stroke, then a virus, then migraines and then back to the virus again. I was given IV drips of antiviral and antibacterial drugs and then had a lumbar puncture which was completely messed up by an inexperienced nurse who'd never carried out this procedure before. When I left hospital I was told the LP had not been very helpful; they wouldn't admit it wasn't carried out properly and that the nurse attempted it had hit blood vessels with the needle on the way in thus contaminating the sample of CSF with blood. It was only because they'd stated the LP was traumatic on the discharge forms that I discovered what had happened.

For six months after leaving hospital I couldn't stand on my own or even walk a couple of steps without losing my balance completely and falling over. I tried phoning my GP and the hospital for some help and support and was just told to rest as it would take 'a good few weeks' to recover. 12 months after leaving hospital I saw an ENT consultant because my balance and constant dizziness had not improved and he made a very perfunctory diagnosis of BPPV. I had a series of Epley maneuvers which made matters much worse. They then discovered whatever virus I'd had had destroyed my left hand vestibular nerve 100% causing parethis of the horizontal canals. It is now two and a half years later and doctors, neurologists, physiotherapists have been no help whatsoever.

Six months ago after complaining to the NHS for the utterly appalling treatment or lack of treatment I received, I got to see this country's leading expert in Queens Square, London to see if he could understand why I still have so many problems and have not recovered. Despite doing nine months of VRT exercises I am still constantly dizzy 24 hours a day have very poor balance and coordination and concentration, suffer from tremors in my head, neck arms hands and feet, have very little energy, constant fatigue and still have to rest in the day in order to try and get through each day. The expert was no different to the others, he clearly hadn't got a clue. His suggestion was that I could be suffering from a degree of PTSD caused by the poor treatment and diagnostics I had received and suggested anti anxiety drugs and antidepressants. Having said this he said, 'you certainly don't appear anxious or depressed, but you never know it might help if you want to give them a try'. I really can't put into words exactly how disillusioned and disgusted I am with the sublime ignorance surrounding meningitis and particularly it's horrendous after effects.

P.S. Apologies for the long post!

When my mum spoke to my consultant to express her concerns that I had been discharged with a different personality, the consultant replied simply that at least I was alive.

I was referred for neuro-psychological assessment and it was this psychologist that assisted me in coming to terms with the effects and the ‘new me’

Only information I was given is you are lucky to be alive from the hospital. My doctor told me that if I had a stroke or an heart attack there would be help out there but as I had pnomacoccl menigitas at 57 there is nothing out there for me.

My only discharge words were congratulations. I was told the headaches would get better pretty soon and I could return to work as soon as I felt up to it. My discharge papers only said to follow up with my GP, and return to the ER if new or worsening symptoms occurred. Then a sheet on What is Meningitis? And what are the signs and symptoms?

Just a stack of papers of everything they did and said...... “ your good to go” horrifying, “ to say the least with the way I felt! After a week and a half stay!

Reason being, no one knows much but what to administer to save your life, and some don’t know that I imagine, but they can’t speak here!😩

After almost 3 weeks in hospital, I was allowed to go 'Home', to my husband's home. At the time of my admission, I was living alone, having been separated from my husband for almost a year. (During my stay, hubby and I talked about a lot of things and agreed to make a go of our marriage.) I was given a discharge letter and told that I was lucky and message a fairly good recovery. I was also given a follow up appointment to return for blood tests that were to determine whether it's got clear of the Meningitis. I asked the Junior Doctor when I went for those tests, if I could come down with Meningitis again and whether I would ever be 100% back to normal. The reply was that no one knew, but now that I'd had it once, I shouldn't get it again. I was just as confused then as I was when I was actually in the hospital. In all honesty, the most and best information I have got has been mainly from Meningitis Now.

I live in the United States and gotten bacterial meningitis a year ago. Spent one month in the hospital and had to use antibiotics three times a day thru pic line for a month after leaving the hospital. Then nothing. I have been self medicating ever since.

If I said I was given some good information but still had questions, that was only after seeing five doctors in five months before I got a diagnosis.

I was in hospital twice for about 4 weeks over 6 week period.... 2 lumbar punctures... Antibiotics.. Sent home with no info about anything... Feel like I'm on my own....

I had VM 2 years ago, and am unable to work. I am fatigued, can't concentrate,lose my balance,but the worst is that I can't sleep more than a few hours at a time.

I thought the absence of info was cos I was in New Zealand.....but obviously this happens elsewhere in the world too. I live in a "town" of 70,000 and we don't even have a resident neurologist here. Instead we have one who comes up to us from Wellington for one day a month, and his time is taken up by the elderly. And our health system dictates that we are not eligible to be seen in another province. So we are on our own. I have to say that the net is absolutely a boon! You find out that you are not an oddity, nor alone. And we have support!

Bear in mind that was 1980!

No advice or meds given.

Only gave me the name of the disease.

The paramedics took me into hospital, as an emergency case in Aug 2011. I was unconscious upon arrival and taken to an Acute Assessment Unit. After many hours, I was finally moved into an Isolation Room, where I remained for 14 days on antibiotics and antiviral IV's.

A lumbar puncture, blood tests, a CT scan and an MRI confirmed I had Meningitis-Encephalitis. I don't recall much more, as I was in and out of consciousness a lot of the time. I had no information at my Hospital Discharge; no drugs, no follow-up hearing test and no one from the Neurology dept. came to see or check on me.

My G.P. told me I'd be fine after 6-weeks . . . it is now 8.5 years later! Meningitis Encephalitis has left me with M.E. and I'm also on antidepressants.

Like Mads1975 below, this ghastly illness has changed my personality. As I grew concerned about my 'inherited condition' I paid to see a private Neurologist, several months after being hospitalised, and he said to me "Don't think you'll go back to being the person you were before August 2011" . . .

However, he did arrange for me to see a Neuro-Psychologist and a Neuro-Physiotherapist, as I was finding certain tasks difficult to process in my head and my balance was really bad - vertigo on escalators and stairs and dizziness a lot of the time. I was/still am exhausted some days and feel disconnected from my body.

Apologies for this long reply.

Unsurprising stats up there. The medical administration are totally inequipped to deal with bacterial/life threatening meningitis cases. Especially in Lancs, U.K. Where I have first hand experience.

I was also given your web site by my GP

Over two years since my attack and it’s like I’ve had a few more attacks. My condition continues to worsen. I had no warning about this.