@Lofty99 , sorry to hear that you have more cancer, you have had so many battles…praying that you will get this in remission and have some pain free days…thank you for coming back to help out with info for @BraveKat . Hugs and prayers for you 
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It has to be so incredibly frustrating to have the ES diagnosis but not be able to get the proper help! Prayers to you and your wife for your upcoming treatments, that they go well and you’re both cancer-free. So, then you can pursue proper treatment for ES. Hopefully, in the meantime, the meds will take the edge off.
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BraveKat
good to hear you can get a consult with the doctor in Wellington, and I hope Dr Smith gets back to you with a positive response
The ACC thing is an ongoing battle since the day that the surgeon butchered my lung - coincidentally on 09/11 in 2024, a bad omen
First I had to fight for any support from ACC for drugs, physio, or income support: it took intervention by my local MP with the minister for ACC at the time
Then, after seeing several health professionals - all of which needed to read my surgical notes to believe it was possible to take out the wrong part of the lung - and finally giving up trying to work with constant debilitating pain, or a mind so fogged by drugs I could not remember why I would go into a room, let alone hold large business computer programs in my mind to add or fix functionality - ACC decided to force me to accept a second, separate claim for the ongoing neuropathic pain, so they could then deny that claim (as apparently serious pain from pneumonectomy - complete removal of a lung through rib spreading and other invasive processes - is an “expected” result, and I had “chosen” to have the second operation, so cannot be an accident and/or it was my own fault, and therefore they could stop giving me income support!
Such a wonderful system is ACC. The fact that I had not actually been informed by the surgeon that he had made a mistake, and he had removed the healthy part of the lung after cutting down the blood supply to the diseased part, so that a week later it was dying inside me, poisoning my blood and slowly killing me - he told me the blood supply to the remainder of my heart was compromised, and had to be removed…
So, not really a choice, cut it out or day… hmmm… I wonder if, while taking the much larger, healthy part of my lung out, he wondered how the blood supply had grown back?
After arguing on my own behalf for months, I finally got an ACC lawyer who convinced them that ALL impacts of the second operation were a direct result of needing it to fix the first, covered condition from the first surgery - so they reluctantly agreed to cover me
And, they assessed me for permanent injury and decided I should receive the princely sum of $4000 as compensation for butchering my lung and destroying both my career and quality of life!
Seems fair to you? Not me, the lawyer agreed and after a reassessment I got a total of $10000 - still not anywhere near the lost income - as when I turned 65, the day after ACC stopped paying me ANY compensation for lost earnings: the fact that as a software developer, my employer explicitly asked me when interviewed whether I could keep working for at least 5 years after retirement age
So at my lost salary - and I had intended to NEVER stop working completely - I have lost a 6-figure sum of gross income
Too bad, the law says we can stop paying you, because you now get the retirement benefit for a single person (my wife is not yet 65), so on your bike…
So, sorry for the long rant, but it still pisses me off that ACC can keep minimising costs instead of actually helping people, which was the intent of the law change that brought it into being: we lost the right to sue for any accident, as costs were covered on a no-fault basis… but costs are NOT covered, even excluding income for a retired person: I still have to pay an “excess” for GP, physiotherapy, in fact ANY health service
And my ongoing costs are high, as I still have significant health issued directly arising from my butcher, oops I mean surgeon: too bad, I have to pay
I cannot actually stop the pain, even with the fogged mind I get from existing drugs: I did find that CBD products helped to take the edge off - though they would normally make me stoned as a side effect
But getting a GP to prescribe them is almost impossible; and when they DO prescribe them, they are very expensive - hundreds of dollars for a monthly supply - but Pharmac will not subsidise them, and ACC won’t fund ANYTHING that is not subsidised by Pharmac, so that is another expense. Honestly, it is cheaper to buy on the black market than from a prescription
Anyway, sorry again for the rant, I will leave it now and let you get back to your own issues 
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This is pretty horrific. The kind of thing people envision before they go into surgery. ( and what I just warned about this weekend in my glass half empty outlook post.) When people in the US want to cap personal injury awards (especially medical malpractice) I ask them if they had the wrong body part cut off in surgery and it completely destroyed your life would you want the damages capped at 50K or would you want compensatory and punitive damages to make up for the malpractice. Usually, they get the point.
I hope you can find some kind of peace in some kind of way even if it is something small.
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Yep, I would be able to get in the $1 million plus if I could sue in the US; here I get an apology and an insulting payment; nothing for loss of earnings; loss of enjoyment of life…
Ah well, on with the show…
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@JugularEagle - I haven’t heard of the accessory nerve affecting the heart, only the vagus nerve so this is interesting info I’ll need to look into!
I am so sorry for your loss of lung & quality of life, @Lofty99. Your story is beyond heartbreaking. I’m sad to know that you have no recourse & that ongoing medical care is at great expense. I will pray for you to get the medical care you need w/o great cost in spite of the broken system you’re being subjected to.
I am not sure. I saw references like accessory nerve damage can lead to heart racing if it affects sinoatrial node. However, this may be Google AI getting it wrong and confusing the term accessory pathway in the heart.
So many things can affect heart racing that it might. Probably takes some digging. I did see an interesting article from American Family Physicians that the poster might want to read on palpitations. Evaluation in primary care setting.
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@Lofty99 , I am so sorry for your experience of the ‘healthcare’ system, that is just a rubbish way to deal with someone who’s had such a clear medical malpractice claim! I thought the UK was bad…I hope that you can find some peace with what’s happened and move forward but with ingoing health and financial issues that must be next to impossible…thinking of you
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Dear @Lofty99, thank you so much for allowing me access into all of this. I should never have doubted that you haven’t already had to fight so many battles for what you rightfully deserve. Your experience with this reads like something from a fictional story - I can’t believe that you have had to go through this and on top of it, find ways to manage your ongoing health conditions. I wish I was more resourced and knew someone who may be able to assist further. I really wish that you will find a resolution to your cancer though your available options. All the very best!
Would being in the “Auckland district” via your sisters place provide any alternative options for your cancer treatment? I’m sure you’ve looked into this already too. 
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Kia ora Lofty!
Fellow New Zealander here from Auckland.
I know I’m responding to an old post but I’ve recently been offered surgery by Dr Kevin Smith and am interested to hear how you got on with him, how you recovered and whether your Eagle symptoms improved. I’m sorry to hear of the other health debacles you’ve endured!
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Hi Chonny
yeah, my cancer issues are on-going, as is my struggle to get a reasonable settlement to my Health Department and ACC complaints
So: Dr Smith - he did a really good job on my surgery, and I healed quite quickly, with no adverse side effects (there is a small chance the tongue muscle and its nerve connections can be damaged, causing temporary or even permanent issues with speech.
It is hard to say how much I benefited from the surgery, as I still have issues with my whole left side as a result of my lung surgery. I believe it has improved, but with other pain still arriving from that side it is hard for my lizard brain to work out what hurts where 
I would recommend him to anybody in a heartbeat for ENT surgery, and given he did no harm to me, I think it safe to say I would get him to do my other side (I have Eagles on both sides) - a job he cannot do for me as I no longer live in Auckland
Hope that helps you to decide 
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Thanks for coming back on @Lofty99 , I think of you often with your issues, how are you doing? 
Pretty crap actually
I had a new primary tumour appear in my remaining lung, doctors said the best treatment was lobectomy, but because I did not have another lung to breath with while they excised the tumour, no surgeon would do the operation
So, radical radiotherapy instead, that knocked me round quite a bit, and the destruction wrought in the lung by the radiation has left me with very little stamina: walking uphill is now difficult, and running impossible - and I don’t know if the tumour is dead or just resting, waiting to wake up and spread further
So, no stamina, no job (forced into retirement by the pain and drugs fogging my mind) and uncertain future
Apart from that, a box of fluffies
I’m so sorry to hear about your current situation, @Lofty99. It’s unbelievable what happened to you w/ the wrong lung being removed & then the lack of compensation for it. You should have free medical care for life as far as I’m concerned!! Can you get a lung transplant in your country? I know they do them in the US.
I am hopeful that the radiation therapy did the trick & the tumor has been killed not just put to rest temporarily. Cancer is an awful thing & so unpredictable. I’m sending you a & praying for you to have peace in the midst of this difficult time.
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Yeah, we do about a dozen lung transplants a year here, but getting on the list is very hard
For example:
they won’t do a double lung transplant if you are over 60 (I was 62 when the first lung was removed)
they won’t do a single lung transplant if you are over 65 (I’m 66 now)
they won’t do any lung transplant if you still have an active cancer (I just had radiation, so…)
Three strikes and I’m out
I still think they owe me a lung though
I completely agree that they owe you a lung regardless of your age, & think the rules they’ve made about age & lung transplants are ridiculous!! Sure wish I could go to bat for you but I’m too far away. 
Sounds like the British NHS.
My dad has blocked carotids and they say the won’t operate on him until he has a stoke.
He is 90 but in very good health. The NHS would rather bin someone because they are old, their protocols are shocking.
My dad is having is surgery in an EU country where healthcare is much better and they will treat you before something catastrophic happens.
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Just so rough for you, it’s amazing you can walk at all in your situation, I’m so sorry but there’s nothing anyone can say…praying that the radiotherapy have killed off the tumour completely 
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