Need to Scream

HooCanTellMee

Or cry! Quick history, my son has serious heart condition, could lead to transplant. Now has curved spine, needs surgery. Everyone been brilliant, but many trips for tests, blood, xrays, mri and anything else you can think of. Surgery due on Wednesday 6th June, but the surgeon phoned this morning, despite all efforts, two anesthetists, cardiologists on call, whole team organised, it has been cancelled. Someone has decided they need a cardiac anesthetist! This will make the surgery be called off, as the new one will need to get to know the case, and my son! This is not the surgeon, he seemed gutted, even wants us to put in complaint form! He even mentioned they might try to shunt the operation to London. We are just outside Edinburgh, all the medical staff that know his case are here. Why, trying to avoid a tricky operation with high risk? We all know the risk! But this is a necessary operation, not a cosmetic one. The family is in bits, not wanting surgery, but this is unbearable. His first heart surgery was canceled after his pre operation, but that was the surgeon needing to do emergency surgery elsewhere, bad for us, but with good reason. This seems to be just the whim of some oick! Don't know what to do, probably can't do anything but just now I just want to vent.............
PS My son has been brilliant, despite all the problems he has just finished 3rd year at Uni, and all being well will come out with a degree. Postponed surgery will probably make year four a no go at least for a year.

System

I dont know what to say except i can only imagine what your going through and i hope the op is rescheduled very soon and that all goes well.

Big hugs :-)

HooCanTellMee

Thanks Judi,
Calming down a bit now, but just feel left in mid air. He is taking it far better than I am! Will post if it is soon. Needed a hug, my husband can go punch a wall when frustrated! I need a verbal vent!
Will wait till Monday then start having a go at the hospital. So much effort put in, and no doubt expense, why couldn't they sort themselves out!

j.e.j.

Sorry to read this, OP. Hope you get a new op date soon.

It is outrageous that people can be given a date for an op, and then it gets cancelled, imo. Especially in a case like yours where it's a serious operation, - you and your family need to prepare yourselves mentally for it, and to then be dropped like that is totally unacceptable. But it happens. All the time. I don't know what the answer is, really, but I think I would take the surgeon's advice and file a complaint.

I've now been given a third date for my op (which is non-urgent, and in no way is comparable with your son's) after the first 2 got cancelled, and I fully expect it to be cancelled, yet again. It's a joke.

marisco_2

HooCanTellMee wrote: »

Surgery due on Wednesday 6th June, but the surgeon phoned this morning, despite all efforts, two anesthetists, cardiologists on call, whole team organised, it has been cancelled. Someone has decided they need a cardiac anesthetist!

I cant imagine all that you have been and will be going through. It must be very frustrating to get so near to the date for a serious operation and then have it cancelled. All surgery carries risks, some kinds more than others, as I am sure you are well aware. Could it be that there may be very good reason though why a cardiac anesthetist may be really vital to have as part of the team. If delaying the operation isn't life threatening, then isn't it best in the long run to have the operation with a medical team that can cover every eventuality. More haste less speed may apply here.

sassyblue

Well you need to vent all you can with that going on OP. I hope the cardiac anaesthetist gets to know your son and case very quickly!

Hope everything goes smoothly when you get your next op date. Xxx

grannybroon

So sorry about the postponement of your son's op. The mental psyching up before such an event must be huge.

I would say that you should go with the plans to have the op here in Scotland. If your son had to go to London then surely a whole new team would need to get to know his full medical background. I would contact hospital and NHS Lothian (or whoever) and complain. I would also ask them to assign a cardiac anaesthetist to your son's case urgently. I would hope that any anaesthetist worth his or her salt could assess your son fairly quickly which could then enable the op to proceed. I can't believe there is no cardiac anaesthetist available in the central belt of Scotland.

Keep strong and I do hope the situation is resolved quickly.

scrappie_2

I know that this must feel like the worse thing in the world for you right now - but I'm sure it has been done with good reason.

Operations that require a number of different 'teams' to be involved will usually be discussed at a multidiciplinary team meeting. It's most likey that on detailed review of your sons case, it was decided that the best possible care for your son would be to ensure a cardic anesthetist take care of him during the operation.

You mention the possibility of the operation possibly been done in London. Again, this is not a dcision that is taken lightly. I'm sure the hospital involved are not trying to 'avoid a tricky operation with high risk' - they are trying to make sure that a patient undergoing a high risk operation receives the best possible care, with the prospect of the fewest complications. Sometimes this means that patients need to have operations outside of their local Trust - in an area where specialist treatment/ equipment/ staff is all available.

It's horrible when things like this happen and I totally understand your frustration. From what you say it sounds like your sons case may always have required an MDT approach - as such to have it posponed at such a late date seems unfair. I'm not sure how the local Trusts work in Scotland, but call and ask to speak to Patient Liason. Lodge a complaint and find out why this change has been brought about so late in the day.

I hope that you get some answers and that your son gets the operation at a centre where the risks are the lowest possible and the specialist care is always at hand.

Good luck.

The_pc_tech

Hi

Sorry to hear your news, when you say a curved spine do you mean Scoliosis?

I assume the op your Son was due to have was the Harrington rod op?

I too have Scoliosis and was due to have the same op but due to the shape of the curve in my spine the surgeon decided after years of observing me it was too risky.

Anyway as I'm sure you have been told as I was that the operation is very lengthy and thus risky, more so with a complication like your Son has.

It really is vital that they have the right people there to deal with any complication so I know you are disappointed but it might be for the best.

If I can help you at all please send me a PM, I'll give you all the advice and support I can.

mum_of_lewis

We are waiting for surgery.My son has scoliosos and needs a spinal fusion, It complicates things as Lewis has type 1 diabetes so they need additional people there.

I know where you are coming from op between hypermobility syndrome type 1 diabetes and scoliosos we are never away from hospitals!

Thinking of you

Janette xx

gunsandbanjos

I know how you feel, my daughter has scoliosis (she has rods in that get lengthened every 6 months), a heart condition that has needed surgery and will need more plus loads of other bits. We have had many a surgery cancelled/postponed! It infuriating and stressful but not much can be done I don't think.