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Original poster

This text message from the hospital - wtf?

42 replies

Afternoonsnooze · 12/04/2024 09:11

I’m not sure if this is a common thing post op but wondering if anything similar has happened to anyone on here?

For the last 2 years the hospital have been faffing about with my sister’s health after she had visited the GP complaining of exhaustion and heart palpitations. They discovered her blood calcium levels were sky high and many scans later informed her she had parathyroid disease and would need the tumour removed.

March last year I accompanied her to chat with the consultant regarding the op. We were told the operation would go ahead that summer.
That never happened. She was eventually given a date in November only for it to be cancelled last minute.

After lots of false starts she had the op 3 weeks ago.

In recovery she was told all had gone well and to go to the GP to get the stitches removed (she did this a week or so ago).

Late yesterday she received a text message from the hospital to inform her the op didn’t go well because they could not find her parathyroid gland and therefore have not removed the tumour. She will now need to have an extensive ct scan (this will be her 5th in 2 years!) to locate the gland and she will need to have the op again!

My poor sister is self employed, doesn’t have a lot of money and just can not afford to take more time off.

I can not understand why on earth they didn’t inform her of this when she left the hospital or at the very least a day or two later. I’ve told her to complain to PALS but she won’t as she’s not a complainer. What would you do?

OP posts:
FiveTreeHill · 12/04/2024 14:20

Presumably they thought they had removed the tumour/gland and the histology has revealed they had not. It is a complex area to operate and its not Ideal but can happen

But that information should absolutely not be communicated by text, and I cant imagine how that has happened?

Original poster
Afternoonsnooze · 12/04/2024 14:34

FadedRed · 12/04/2024 13:25

The four Parathyroid glands are each the size of a grain of rice and are located behind the Thyroid gland in the neck. The operative area is behind the very vascular Thyroid gland and surrounded by the carotids arteries and vena cava veins, so a scary place to operate, because of the risk of damage to these major blood vessels causing catastrophic bleeding, also potential damage to the larynx (voice box). These adenomas do tend to be fairly small, usually only millimetres in sizes, and very similar in texture and colour to their surrounding tissue. It is not easy surgery. The tissues removed are sent for histological examination and only then can it be confirmed or not, that the Adenoma has been removed. The pre-op scans are very accurate, but not 100%, given the nature of the Adenoma tissue. This should have been clearly explained to your sister before the surgery, and she should be also have been given information in writing on a leaflet to keep. Presumably she signed a consent form for the surgery?

What is worrying about this is that lack of understanding, but more worryingly that your sister appears not to have had (at least you have not said) at least two normal blood results from test taken immediately post operatively and a week or two later, to confirm the blood calcium and parathyroid hormone have returned to and stayed at normal levels, thus confirming that the Adenoma had been removed. When I had this op, I had to stay in hospital for some days as my levels went too low, which also has health risks, and ended up having eight blood tests until the levels were ok - I had some spectacular bruises 😂!
If you search on the internet, you will get loads of hospital published patient information sheets, which will explain things better than I can.
Your sister needs to talk to her GP or the surgeon or Endocrinology doctors to understand what has happened and where they go from here. Then you can decide whether there has been any poor care that warrants a complaint. PALS are good at getting to the bottom of issues, not just complaints, so they could be helpful if you cannot get to talk to anyone fairly soon.
There is medication that can be given where the calcium remains too high, though surgery is the best option in the long term. Also has your sister has a bone density scan, as raised calcium can cause Osteoporosis?

Thank you. Sister has had the post op blood tests, these were taken at the GP surgery when she had the stitches removed but as to date, she hasn’t had any results back from these.

Obviously, I wasn’t there when she signed the pre-op forms so I’m not sure exactly what was written or signed for but I accompanied her when she had her first (and only) consultation with the surgeon she gave us the impression it would be very simple and easy for her to perform. She did warn of the potential (yet rare) risk of larynx damage but never mentioned any other risks including any bleeding issues. Neither did she explain that the operation could sometimes be unsuccessful and would need repeating. I took notes of this consultation (as I do with my own) and these risks or drawbacks where never discussed which is rather disappointing.

My sister says that she was told the surgeon would come round and see her post-op before she was discharged but apparently that never happened, she only saw nurses. She has not seen this surgeon, her endocrinologist or in fact anyone at the hospital since the operation. She has not had any contact until this message arrived yesterday. She is still yet to get through to the secretary (I worked for the NHS in admin for 15 years and know that they do indeed turn off the phones when very busy).

A bone scan has never once been suggested even though I’ve pushed her to discuss this as our mum is bent over with osteoporosis but my sister has a terrible habit of burying her head in the sand when it comes to her health.

Hopefully the department will contact her next week and it’s all sorted but how very frustrating when this has been dragging on for several years now!

OP posts:
Original poster
Afternoonsnooze · 12/04/2024 14:38

corlan · 12/04/2024 14:10

I have had similar happen nearly 10 years ago. I had the first op on parathyroid - 1 and a half glands removed but didn't fix the problem.Turned out I had tumours on all four glands but they couldn't tell from the pre-op imaging they did. Had another operation 18 months later to remove another 2 parathyroid glands.
Like others I would encourage your sister to ask for an explanation. I remember feeling very low after my first op. I had literally had my throat slit open for no result! Hopefully in time your sister will feel better and get the surgery she needs. I had my second op at a bigger hospital that had equipment that could measure parathyroid hormone levels during the op , so maybe this will be an option for her?

It does appear to be quite a tricky little organ to work on. It would have been nice of the surgeon to have explained this a little clearer when we consulted with her then perhaps my sister would have been a little more prepared.

Are you feeling much better now you have had the second op? These things seem to drag out for such a long time don’t they?

OP posts:
Ponderingwindow · 12/04/2024 14:41

When I had my thyroid out, it was extremely enlarged. They tried not to remove my parathyroid glands. It was in pathology that they confirmed I lost 3 and with further examination that the one left behind was damaged.

we actually found this out before the pathology results returned because I had a rapid calcium crash and had to be rushed back to the hospital.

corlan · 12/04/2024 14:48

Afternoonsnooze · 12/04/2024 14:38

It does appear to be quite a tricky little organ to work on. It would have been nice of the surgeon to have explained this a little clearer when we consulted with her then perhaps my sister would have been a little more prepared.

Are you feeling much better now you have had the second op? These things seem to drag out for such a long time don’t they?

Show quote history

It is much more complicated than you'd think. I don't think I appreciated that either until my first operation didn't work!
The second operation worked fine thank goodness and I'm really grateful to the surgical team. Was worth waiting for!

Reallybadidea · 12/04/2024 15:10

Very similar thing happened to me - was told immediately post-op that they'd removed 3.5 out of 4 parathyroid glands but the histology later showed that some of them were bits of thymus in the wrong place. They couldn't have known that prior to me leaving hospital - however they did have the decency to tell me in a proper follow up appointment.

FadedRed · 12/04/2024 16:45

These links are to the NICE guidelines for Primary Hyperthyroidism. They might be useful to refer to as ‘best practice’ when seeking more information/possible complaint about some aspects of care.
https://www.nice.org.uk/guidance/ng132/resources/hyperparathyroidism-diagnosis-visual-summary-pdf-6782711869
https://www.nice.org.uk/guidance/ng132/resources/hyperparathyroidism-management-visual-summary-pdf-6782711870

https://www.nice.org.uk/guidance/ng132/resources/hyperparathyroidism-diagnosis-visual-summary-pdf-6782711869

Idideridest · 12/04/2024 16:58

Don’t stress about the CT scans, whilst it’s not ideal, it is a small, theoretical risk.

I used to be a Radiation Protection Supervisor and have just got out of a 5 week hospital stay and clocked up 12 CT scans and 6 chest x rays!

sorrynotathome · 12/04/2024 17:05

Odd to say no driving for more than 3 weeks after a minor op on your neck.

TraitorsGate · 12/04/2024 18:31

sorrynotathome · 12/04/2024 17:05

Odd to say no driving for more than 3 weeks after a minor op on your neck.

Probably so you don't turn your head and neck to look round, all surgery needs time to heal especially if you've got stitches

Original poster
Afternoonsnooze · 13/04/2024 10:39

Dsis had a letter from the surgeon today to say she is very sorry but it appears she has removed a lymph node and not the adenoma. Because if this the calcium levels are still very high.

The letter goes on to say they will hopefully find the adenoma on the upcoming ct scan and the surgeon will then contact dsis to discuss a plan of action.

OP posts:
Original poster
Afternoonsnooze · 13/04/2024 10:40

TraitorsGate · 12/04/2024 18:31

Probably so you don't turn your head and neck to look round, all surgery needs time to heal especially if you've got stitches

Show quote history

That’s right, they advised she didn’t turn or stretch her neck to far.

OP posts:
Original poster
Afternoonsnooze · 13/04/2024 10:41

Idideridest · 12/04/2024 16:58

Don’t stress about the CT scans, whilst it’s not ideal, it is a small, theoretical risk.

I used to be a Radiation Protection Supervisor and have just got out of a 5 week hospital stay and clocked up 12 CT scans and 6 chest x rays!

That’s reassuring, thanks.

OP posts:
Saintmariesleuth · 13/04/2024 10:46

I'm glad your sister has had some clarification from the surgeon OP, even though it's not what she would want to hear.

I hope she gets a scan appointment in a timely manner.

Are you able to attend the next surgical appointment with your sister (if she agrees, obviously) and take a list of questions with you?

Original poster
Afternoonsnooze · 13/04/2024 10:53

Saintmariesleuth · 13/04/2024 10:46

I'm glad your sister has had some clarification from the surgeon OP, even though it's not what she would want to hear.

I hope she gets a scan appointment in a timely manner.

Are you able to attend the next surgical appointment with your sister (if she agrees, obviously) and take a list of questions with you?

I will definitely offer to go with her so I can at least take notes etc.

OP posts:
Saintmariesleuth · 13/04/2024 10:59

That's great that you'll be able to attend. Definitely some questions to be asked around all of this, and it sounds from your previous posts that your sister is be unable to do this.

I'm still horrified that she received the initial news via text message. I would consider taking that to PALS if you feel you have the energy

Original poster
Afternoonsnooze · 13/04/2024 11:26

Saintmariesleuth thank you. That’s definitely something dsis will need to think about.

OP posts:
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