To think neurosurgeons shouldn't leave me in this much pain and not able to sit up

[WalkingtoFarAhead]

hi

I was supposed.to have surgery yesterday (3rd time the surgeon had planned.it) but.it never went ahead. I was supposed ro be first on the list and was all ready to go down. the "Surgeon" came to see me a few hours later to say it has been cancelled. which I thought would happen as this surgeon has done nothing to help me in a couple of years and fobbed me off constantly along with arranging surgery two other timea but not doing anyting.

I have.had to contact pals a number of Times for help and also made formal complaints. things seem to change for a few weeks then he goes back to how he was.

so yesterday when he came to the bed, he told me he could keep me in on pain releif and try to get me to theatre but.its unlikely to be any time soon and most likely next month. I agreed as I cant sit up and the pain is unbearable.

A few mins later the nurse came and said you are off home. I had no explanation and asked for pals theu came and was no use.

so I got home and now I cant sot up at all, I keep vomiting, severe pain and dizzyness and cant get any help from the surgeon or amyone. im waoting for my GP to phone to atleaat get some pain relief (I was sent.home with paracetamol)

I have been like this for 10months ir has slowly been getting worse and today is the worst I have been.

I dont know what to do.

AIBU to think NHS should not leave me like this? The surgeon knows I have a rare brain disordr and already have a shunt.in which is causing this problem.

Oh my goodness.....that sounds truly awful for you. No of course YANBU and I'm so sorry that you are having to put up with this. Obviously you need to tell your GP how bad it is and hopefully they will get you re admitted.

Have they told you why your surgery Kees being cancelled? I mean, the clinical reason for it?

Do you see the same consultant? Can you ask for a second opinion?

How terrible for you keep on with your Gp can you be refered by him to another consultant or surgeon ??

I have asked gp to phone me. it most.likely be soon for the phone call. he is a good gp well has been in the past.

PAls just said he would have had his reasons and it will be best.to just.go home and rest and take regular paracetamol. It seemed she was bored.and put.out.by havong to come to me.

if I call an ambulance I will be.took to my local hospital who doesnt know a thing about.my.illness or shunt and will most likely just discharge.me with codiene.like theu have.on the past. hence the reason ihave been struggling at home for the past 10months.

The surgeon just said it has been cancelled. I never seen an anesthetist or anything yesterday. I signed my consent form last week and that was it.

this is the first time he has allowed.it.go as far as being admitted to hospital. Both other times it got cancelled before the.pre op assesment.

he is my 2nd opinion and if I see another.consultant it will take.even longer to get treatment amd every day im at risk of it causong chiairi.

You should always be given a reason for cancelled surgery. It makes no sense to bring you in and cancel it unless something has happened, no bed available or theatres have run over because of an emergency as sometimes happens. It seems very mean that they would bring you in then change their mind but not tell you why. And unacceptable.

To be honest OP, you need to kick up a fuss. Have you questioned anything? You're perfectly entitled to say you aren't happy and you want to know why your surgery was cancelled and what the what plan is. Phone up the consultants secretary and tell them this. Be firm.

Is it a shunt/shunt related problem? Why not try contacting ASBAH? They have given me some excellent advice in the past and, depending on where you live, they might have an advisor available to visit you at home.

I think Neurosurgeons are a notoriously arrogant bunch. Is there a nurse specialist that you could phone who could give you an explanation about what will happen next?

It is a shunt problem (over draining LP shunt).

The Gp hasn't called so another night of pain :( it just seems no-one wants to help.

I've tried questioning but the people who I call (surgeons secretary/pals) don't know and then I get nowhere else. I've tried formal omplaints but with how much pain I'm in now is too much and I can't face making a complaint.

I've just had a look at ASBAH and it's not for my illness so doubt they can help.

There is a specialist nurse for my sort of illness but I don't know who she is or where I can contact her.

I'm going to try the surgeon again and hopefully get some advice but doubt I will :(

You are entitled tp an advocate. There will be an advocacy service locally . You can take them with you to appointments and instruct them to speak on your behalf if you don't feel up to challenging your consultant . You can prepare in advance what questions you want answers to and also when they should step in. Have you tried making a follow up appt with the consultant?