Very large brain tumor and amazing medical staff at chch hospital. (Warning graphic scar)

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Dratsab

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#2181015 15-Feb-2019 16:41

Woah - that's huge!! Great that you pushed and got the appointment that was needed, even better that it was benign. Hope she has a speedy recovery!

Fred99

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#2181077 15-Feb-2019 18:52

JaseNZ:

She started showing sign's of like a stroke slurring speech, mobility issues etc, I was very concerned and she went to her GP , she was referred to a neurologist but 4 months went by and nothing, During this time I hounded and hounded them about seeing her to no avail.

She got so bad she could not even get from the bed to couch and her speech was very bad and she was forgetting things.

In the end I threatened to show video of her condition to the media and low and behold an available appointment the very next day became available.

What was her GP (as primary caregiver) doing while this was going on? Was he/she aware that her condition was deteriorating between the consultation and 4 month delay?

Very glad to hear this is going to have a happy outcome, but FFS - you've been through an awful experience.

JaseNZ

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#2181089 15-Feb-2019 19:19

Fred99:

JaseNZ:

She started showing sign's of like a stroke slurring speech, mobility issues etc, I was very concerned and she went to her GP , she was referred to a neurologist but 4 months went by and nothing, During this time I hounded and hounded them about seeing her to no avail.

She got so bad she could not even get from the bed to couch and her speech was very bad and she was forgetting things.

In the end I threatened to show video of her condition to the media and low and behold an available appointment the very next day became available.

What was her GP (as primary caregiver) doing while this was going on? Was he/she aware that her condition was deteriorating between the consultation and 4 month delay?

Very glad to hear this is going to have a happy outcome, but FFS - you've been through an awful experience.

Yes her GP was aware of how fast she was declining and was going in to bat for her but not as much as me.

I did look at going private and it was a 2 month wait for appointment after referral from GP.

Ding Ding Ding Ding Ding : Ice cream man , Ice cream man

Lostja

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#2181092 15-Feb-2019 19:30

Wow what a story, all the best with the recovery!!

Ge0rge

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#2181107 15-Feb-2019 20:52

Isn't it amazing how much medicine has progressed? Not that long ago, something like that would have required the entire scalp shaved and a much bigger scar - in a few months your wife's hair will have grown over that thin line and there'll be no evidence to show. Fantastic.

I wish your wife a speedy recovery.

lende

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#2181129 15-Feb-2019 22:27

Very happy for you and I wish a speedy recovery
Also appreciate the efforts and promptness from clinical staff

However Not everyone is lucky enough to get medical service at right time and get diagnose correctly here in NZ
I went to starship hospital for my 5 yr boy having abdomen pain, loose motions, vomiting for 2 days, after our GP referred us there and asked to do urgent X-ray and scan there
Doctors at starship ED (mis)diagnosed and assured us to go home telling us this is just a gastro which will last for 3 days. They did X-ray but said it will be analysed tomorrow (Wednesday) morning and said scan is not needed at this stage

We came home on Tuesday night and my son suffered the same pain for another 3 days. My wife went to GP on Friday midday since she couldn't see our boy like this anymore and GP said your son has got appendicitis (appendix infection) which is identified in the X-ray done on Tuesday night at starship and radiologist has flagged this to Emergency department (ed) requesting to call patient to hospital for further treatment ASAP. .....and unfortunately we didn't get any call from ed

We rushed tostartship immediately from Gp place and they did operate on my son after a scan. Doctors said appendix is busted sometime around Tuesday (may be when we were in starship) which has created lot of infection in the tummy which is life threatning as the infection may cause multiple organs to fail ☹️
This surgery could have been avoided if ED would have ring us on Wednesday morning as per radiologist instructions

Today my son is still hosptealised (7th day) after Surgery and he has to go through another procedure tomorrow to drain the puss out created in his tummy and after that also he may need to go through second surgery in a weeks time if they think so
And all this caused by 1) misdiagnosis and 2) ED missed/forgot to ring us

I don't want to criticise anyone here but want to create awareness that this sort of things can happen so be extra cautious
Also I appreciate the whole team surgeon, nurses who all taking care of my son post surgery.

Btw this is second time my son misdiagnosed, first when he was 3 he had pneumonia and they misdiagnosed with viral. Later he had to hospitalised for almost week ☹️

Praying god for speedy recovery of my son

Fred99

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#2181827 18-Feb-2019 09:25

lende:
And all this caused by 1) misdiagnosis and 2) ED missed/forgot to ring us

Can't comment on 1) as it's always going to be arguable.

But for 2), then that's a procedural cock up of the worst kind that could have had fatal consequences.

If they couldn't get hold of you for some reason, you'd have thought they'd have contacted your GP and secondary contacts from medical records - all efforts should have been taken to track you down until they found you.

Consider lodging a complaint with Health and Disability Commissioner.

The hospital/staff may clam up and cover each other which will be frustrating, but don't worry too much about that - or in getting a resolution that "punishes".

Behind the scenes there should be a fair amount of panic - an analysis of WTF went wrong, and a sincere effort made to make sure it doesn't happen again. Ever.

SATTV

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#2183238 18-Feb-2019 20:48

@jasenz I have been in exactly the same boat, it took about 3 years to diagnose my wifes medical condition, she had been showing symptoms for about 6 years ( headaches, vomiting & diarrhoea )

It was not until one day she lost the ability to speak and we thought she had had a stroke, a CT revealed she had had a small bleed on the brain, angiogram confirmed the bleed and the MRI revealed all was OK that was until the Neurology review and the senior Neurologist found something that everyone had missed.

In it own it was benign which was good but work cover insurance would not pay out as it was benign.

fast forward 18 months and the little thing that everyone missed had grown and blocked a drain in the brain, the fluid was now the size of a ping pong ball and pressing on a part of the brain ( near the stem ) where it makes you breath, we had no idea but our puppy had become incredibly protective of my wife and we think he knew.

10 days later she was in for a 12 hour surgery but they took only six.

9 months later another fluid sack on the other side of the brain the size of a gold ball appeared and they could not drain that one, about 3 months later the fluid sack had gone to another cell and they were able to drain that one but caused some damage, my wife has lost her balance and has weakness in arms and legs ( the doctors will not admit it but we are sure it was from the surgery )

Thankfully that was the last one.

If I can give you some advise - find someone to talk to. I did not have anyone to talk to and we did not have money at the time for me to seek professional help or if talking is not your thing, if there is something that helps you - do it.

You cant help your wife if you are not good.

I am glad the operation was a success and the great thing now is that your wife is in the system and will get regular checks.

All the best to you both.

John

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lende

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#2184027 19-Feb-2019 23:30

Fred99:
lende:
And all this caused by 1) misdiagnosis and 2) ED missed/forgot to ring us

Can't comment on 1) as it's always going to be arguable.

But for 2), then that's a procedural cock up of the worst kind that could have had fatal consequences.

If they couldn't get hold of you for some reason, you'd have thought they'd have contacted your GP and secondary contacts from medical records - all efforts should have been taken to track you down until they found you.

Consider lodging a complaint with Health and Disability Commissioner.

The hospital/staff may clam up and cover each other which will be frustrating, but don't worry too much about that - or in getting a resolution that "punishes".

Behind the scenes there should be a fair amount of panic - an analysis of WTF went wrong, and a sincere effort made to make sure it doesn't happen again. Ever.

I Am not looking for punishing someone or taking revenge, all I want is to make sure that such things should not happen to anybody so rather than lodging the complaint with commissioner I spoke to head of ED to understand what went wrong and how can we improve the same,
A) (short term paper based) setup a manual process for ED staff to get radiology results/alerts from radiologist every morning and evening; and note down on to the patient worksheet. It is expected that ED staff will follow up with patient if suggested by radiologist however for any reason it didn't happen then staff from next shift will pick this up from patient worksheet and work on it.
B) (Long term automated one) Update emergency whiteboard system (one which is present at nursing station in ED) to populate and highlight such kind of alerts with their eta

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