Has anyone else had a difficult to diagnose meningitis? & biopsy?

[OkeyDokey]

Hi all

I have posted on here before but just thought I'd ask the question I a different way in case it catches anyones attention!!

My husband has just had a biopsy as still haven't received a diagnosis & theredore correct treatment 8 months down the line.

Just wondered if anyone been in a similar situation? Not really sure what to expect when we get the results....

Thanks

V Last edited by OkeyDokey

[Teameric]

Hi

My wife had a biopsy back in February and it took something like 3 weeks before they told me she had (or had had !) pneumococcal meningitis. However, I felt even then that they seemed really uncertain and had been holding back from telling me anything for sure, it was all possibility and maybe. I was told that her results had to be seen by some national specialist who was not available at the time amongst other reasons for the delay although she was at a leading London hospital with neuro specialist consultants.

Obviously at the time I was pretty fraught and may have misinterpreted stuff, but I distinctly felt they were scratching around in the dark and being rather evasive about it. Because of uncertainties surrounding my wife's condition, I am still not sure whether she has had the correct or best treatment.

I don't know if your husband is conscious or not and that might make a difference as he could perhaps give them information to aid diagnosis. My wife was in a coma for 2 months so not able to contribute. In the main they seemed to throw steroids at my wife, sometimes in horrendous doses, and was always worried about that. From a lay point of view it did not seem all that scientific.

[OkeyDokey]

Hi Teameric

Many thanks for the response & sorry to hear that you & you're wife have had this horrible experience.

Yes, husband is conscious, but this has been going on for a long time....He was unwell for a couple of months before finally being admitted to hospital & diagnosing meningitis but the cause of it seems to be the problem.

He's since been treated for various causes for the past 6 months+ but nothing helped & he too is on high dose steroids. He's had countless lumbar punctures but they've never found anything.

He had shunt put in to try to combat the encephalitis which we thought was the main symptom but he's stll not at all well, hence having the biopsy.

I don't know how long it takes to recover from that type of surgery but I'm concerned because he seems much worse now than he did before he had it. Even speaking is a big ask, but he's been discharged from the HDU because he's 'neurologically stable'. I've expressed my concerns as this was done over the weekend by an on call registrar who isn't familiar with how he normally is or his background, but not sure what else I can do. All so frustrating.

Just hope that this gives some answers, but really not sure what they're going to come back with & they don't want to speculate. He to is in a 'leading' hospital but they have told us many times that they don't have any answers. When ever I search online I find the more common causes but difficult to find out about the rare types, at least in laymans terms that I understand!

Hope you don't mind me asking how long it is was before they did a biopsy on your wife? Is she well now?

All the best

[Teameric]

Sorry its taken so long to reply, but I have been away. No I don't mind you asking at all.

My wife went into a coma on December 12th 2012. She was admitted to our local hospital ICU and remained there for 10 days on life support and with CAT scans, etc. She had her first MRI at the end of December and then was transferred to Royal London at the beginning of January 2013, specifically for a biopsy. However, on transfer they decided that she had contracted the norovirus (at the previous hospital) so would not admit her to the theatre until that cleared. Unfortunately in her fragile state of health that took a long time and was a cause of great concern and frustration to me. For heaven's sake if someone got run over and needed tests they would not have sad no because he/she has a virus! Anyway, she had the biopsy in February and it took them 3 weeks to give me any indication of results and frankly I was not convinced they had gained much information from it anyway. Maybe I was by this time severely under impressed with hospitals and the specialists!

After they decided they were not able to do any more for her and they needed the bed, my wife was 'parked' in a general ward at a local hospital from the beginning of March until a bed became available in a good neuro care/rehab home which was in mid-May.

She is still there and largely non-responsive, but some days I am able to wake her even if only for moments. This is a very slow and long process and no-one seems to have the knowledge to advise with any degree of confidence.

I really hope your experience for your husband is better than mine has been for my wife.