Where do I have my Op?

Hi, I am almost 73 years old and have recently been diagnosed with primary hyperparathyroidism. As I knew nothing at all about this condition I have scoured the internet for information and have perhaps confused myself even more. Because of my age I feel that I cannot afford to make a wrong decision as to where I have this operation carried out. There are so may different opinions out there and so much information, just what should I do next? I have had the x rays and scans and the final scan will be this week on my neck, my consultant assures me that the operation can be carried out locally but the Norman clinic in Tampa seems to be so much more convincing as to the outcome. I travel to Florida with my family every year so do I just go with them and arrange the operation. I just want the best possible result first time. I would be very interested to hear from anyone who has had this operation in Tampa. Also what kind of travel and health insurance did they need as obviously my yearly travel insurance will not cover travelling with the intention of having an operation. I will be so pleased to hear from anyone who has had a similar decision to make.

Hi Carol - I have replied to your PM - what part of the UK are you in, by the way, and who is your consultant and at which hospital?

There is a list in the Reference Section here of consultants and how many PTH surgeries they have done. You need a very experienced surgeon with this op. Mr Palazzo does around 150 of these surgeries a year, and his colleague does about another 150, so they are v-e-r-y experienced.

But your consultant sounds very confident - and at least they have actually diagnosed you with a primary hyperparathyroidism issue. This is wonderful!! So many of us have struggled to actually get a correct diagnosis!

If you can let us know who your consultant in the UK is, someone here on the forum may have experience of them.

Please see my PM back to you.

Best of Wishes, Tigerlily.

How did the scan go Carol ?

Nelly

Hi, Scan didn't show anything unfortunately so it was recommended that I would need a sestamibi scan. PHoned  Nuclear Medicine today but they have not had a referral. I explained that my appointment to see my consultant was on 10th February and he would need to see this scan. They said it was very unlikely to be done before then. I think I am going to need lots of patience! Thank you for asking, Carol

Negative ultrasound is not unusual and unfortunately sometimes the sestamibi is not much better, I didn't get anything definite showing up on either but with my test results my surgeon was happy to go ahead anyway.
Yes lots of patience required but you will get there in the end, do keep us posted on how things are going.

Good luck

Nelly

I too am seeking a surgeon - has anyone experience of the Birmingham Thyroid Clinic and John Watkinson, senior surgeon, or can anyone recommend another in the Midlands area?

I shall see my GP again this week and she is ready to refer my case onward. I'm 82 and want to get on with it after several inevitable false starts without a diagnosis, now acknowledged to be Primary Hyperparathyroidism.

I'll go anywhere in the country if nec. obviously...though would prefer not London.

Hello - glad you have found us on this forum.

I personally have not heard of Mr John Watkinson. It might be an idea to ask his secretary how many purely parathyroid surgeries he does in a year. One a week is considered fair.

He is on the BAETS caseload list for 2015 as having done 6 purely parathyroid surgeries in 2015, 4 at the the Priory, Edgbaston and 2 at the QE Birmingham.

When choosing a surgeon, two questions to ask are: 1. Are they able to look at both sides of the neck to check all four glands? and 2. Are they able to measure the parathyroid hormone level during surgery?

Some surgeons will only go to the adenoma that shows on a scan, which is obviously not ideal. My surgeon removed a lower left adenoma that had shown on US (but not on the nuclear scan), but when the PTH level was measured during surgery it was still high. So he moved to the right side of my neck, where both upper and lower glands were abnormal. I now have just the one remaining upper left PTH glands which seemsto be functioning normally 2 years post surgery.

There is a Mr David Chadwick at Nottingham City Hospital who is becoming quite experienced in PTH surgery in the Midlands area. He did 42 purely PTH surgeries in 2015 and 61 thyroid operations. Several people I know have had successful PTH surgery with him and he is regarded as very pleasant and easy to talk to.

I was 62 when I had my surgery (Fausto Palazzo, Hammersmith) and like you I wanted to ensure that I only had the one operation and the matter was ended. I was glad I picked an experienced surgeon who could look at both sides of the neck - especially as I had 3 abnormal glands.

Do keep us posted on what you choose to do and how things progress - and ask any more questions that you need to.

Best of wishes, Tigerlily.

Bless you Tigerlily!

Your info is invaluable - fancy having to resort to finding your own best care on such unfamiliar territory. One at least should be able to expect to find a small handful of centres of excellence scattered country-wide, capable of covering the more uncommon problems. The Florida set-up has done it for the US....and I thought I'd found similar in Brum. Just shows. I'll go do a bit more research on the back of your help - and report back.

I see we share the same 'hobby' interests too!

Thanks again from Selby.

Thanks Selby - do have a look in the reference section of this forum at the latest BAETS outcomes list which should help you.

There are moves afoot at NICE to produce some national guidelines for the diagnosis and treatment of parathyroid disorders by 2019, I believe. And I agree with you that centres of excellence should be available for our more obscure afflictions!

3 people I know are having surgery with David Chadwick this week, so he is carving out a little empire in Nottingham. Bless him, he is not afraid to operate when scans are inconclusive which is very rare at the moment.

Let us know how your research pans out and I hope you are able to get things moving very soon.

That reminds me, I think there is a Radu Mihai working out of Banbury/Oxford. He did 16 PTH surgeries at Horton General Banbury in 2015 and 42 at the Churchill in Oxford, so he's getting some practice in now as well! Neither of those are too far from you, I think.

Best of Wishes, Tigerlily.

Hi Tigerlily,

I've printed off  copy of the BAETS list already - and yes - I'd missed the fact that Radu Mihal had covered the ops at two hospitals.

David Chadwick is high on my list - along with Dr Miles Levy and Dr Trevor Howlett operating at Leicester Royal Infirmary - but that clinic hasn't made the BAETS list oddly!

Both men have been established since 2005 and 1983, so they too were up for consideration, along with David C.

Either or both are on our patch, and so I'm hoping that my Doctor might know of - or gain access to additional info.

As things are then, I think David comes top on the basis of what you have advised above, and I'll be grateful to learn how the three patients that he's operating on this week, get on.

Meanwhile, please extend my good wished to them for a speedy recovery.

Thanks again for all your help.

From Selby.

Hi Selby

David Chadwick's patients are recovering well - I will pass on your good wishes.

Dr Miles Levy is a great endocrine specialist. I saw him before being referred to Mr Palazzo in London. I think Miles Levy refers to David Chadwick as he told me that he would refer me to Nottingham (but London was an easier trip from Suffolk).

If someone is not on the BAETS list, they might be ENT surgeons. I would stick with endocrine surgeons for a PTH operation.

Looks as though you are going for DC. My personal view is that would be a good decision. His NHS waiting list for a consult is not very long at the moment either.

Best of Wishes with whatever you decide - we remain here for any further advice you might need - Tigerlily.

Hi Tigerlily,

Wonderful news about the three patients, great. Yes - wise words about sticking with an endo surgeon - also good to know that David C's waiting list is reasonable too. I'll get my Doc onto that ASAP.

I'll keep you in the picture - and would love to learn how the three patients are finding their recovery....

Kindest regards

Selby.

Hi
Where do I get the list of surgeons in the UK please?
Thanks
Alli

Hi Alli - it should be in a list here under Useful Website links, although I could not access it myself a moment ago.

Have a look at the website of BAETS - British Association of Endocrine and Thyroid Surgeons. There should be a list there. Let me know if you can't find it.

Where are you in the UK? I could point you in some directions.

Best of Wishes, Tigerlily.

Hi Tigerlily thank you so much for your reply. I’m in Yorkshire. Currently I’m awaiting further investigation for high calcium and have seen my Endo today and had a blood test for calcium Vit D and PTH . I had no idea that Hyperparathyroidism was so complex! I have Hypothyroidism for the past twenty years and dealing with that and getting adequate treatment is bad enough. I have lots of the symptoms of hyperparathyroidism so I’m just waiting to see what these tests show. This is a great site with so much information

You are welcome, Alli, and welcome to the forum here!
Your endo is doing the right tests for you - do let us know the results when you get them.
Lots of us have hypothyroidism as well. I have Hashimotos myself and am now hypothyroid.
Did you find the BAETS list OK? It is a good idea to choose a surgeon with good experience of PHPT who does at least 50 purely HPT surgeries a year. The name of Mark Lansdowne rings a bell with me at the moment. I think he is near you and someone on the forum here has consulted him. You might like to check him out whilst you wait for your results.

I'll see if I can make other surgeon suggestions for you.

Meantime, hang on in there, drink water to flush the calcium though and out, and read as much as you can to educate yourself. Parathyroid.com is good information, if a bit brash in tone!

Back soon, Tigerlily.

Thank you for your reply. Yes I have had a look at the list and Mark Lansdowne works at my local hospital I see he has performed 25 parathyroid ops, would that be enough?
Thanks for your help
Alli

Hi Alli
Its not optimum, one a week would be better, but someone on here speaks well of him and said you can at least talk to him!
The questions to ask are:
1. Will you only look and go for what shows on a scan? Or will you check all four glands during surgery?
2. Can you measure PTH intraoperatively to be sure that there are no more hyperfunctioning glands?
3. If you suspect that there may be more, will you convert to a bilateral exploration to check this (and through the smallest incision possibly)?

Are you far from Nottingham City Hospital? David Chadwick there has a good reputation with members of another forum I am a member of.

Check the BAETS list for others in your area - or elsewhere if you are prepared to travel further, for those who do 50+ purely PTH surgeries a year.

And let us know your blood test results when you have them.

Tigerlily x

Thank you so much Tigerlily forum like these are so important and informative. I live in Leeds and indeed I work at the same Hospital that Mr Lansdown works at! I could go to Nottingham I would definitely travel to someone with the greatest experience  my first hurdle is to get the diagnosis I’m hoping that my PTH levels come back very elevated as I will have a struggle on my hands if they are normal. Reading various articles on Hyperparathyroidism it would seem that maybe the best option is to have the surgery in order to check out if there is actually a problem.
Thank you again for your help
Ali

Cheers, Alli:

If you go to:
Deanonymised-BEATS-surgeon-data-2016.pdf

On a PC, you will be able to click Control F and a Find box will come up.
Try searching different towns in your area for surgeons.

Mr Lansdowne is only listed as doing 2 PTH surgeries in 2016, so you might like to check out some other surgeons.

Keep us posted on developments, Tigerlily.

SORRY:
Deanonymised-BAETS ..... (not BEATS).

Thank You Tigerlily will check this out
Alli