Norman Parathyroid Center - Tampa Florida

Hi all,

I've just joined this support Forum after having recently been diagnosed with Hyperparathyrodism. 

I will be going for my appointment with the parathyroid surgeon next week (5th June) and following on from that, another appointment with the Endocrinologist at the end of July (why I've been booked in to see the surgeon first and the endrocrnologist afterwards I just don't know) I'd have thought it would have been the other way round (can anyone shed some light on this please?)

Anyway, in my attempt to learn as much as I can about this condition, I have been surfing the web and have come across the Norman Parathyroid Center in Tampa, Florida where they use the unique Minimally Invasive 4-Gland Parathyroid technique. They don't only focus on the one gland that the scan may have picked up on but also check on the other 3. The incision is very small and the whole operation takes around about 14 minutes. They then go on to discharge the patient within a couple of hours or so of having had the surgery. It's fascinating reading and really head and shoulders above other parathyroid surgery techniques around the world. I strongly encourage you all to take a look at their website (not sure though whether I am allowed to post the link here though).

Obviously, being in the UK, the techniques used here most probably vary from hospital to hospital but I know that the surgeon I've been referred to also does a minimally invasive procedure but not sure whether he also checks the remaining glands ( I know that if they are not experts in this field, and don't usually do so, digging around looking for the other 3 glands can often times cause more problems such as leaving scar tissue which can then subsequently make it difficult for further surgery if they have missed an affected gland that for some reason has not shown up on the scan. 

I would be interested hear from any of you that have already had the surgery and to know whether any of you have had to have further surgery to remove a second or third gland which I know sometime happens. I wish Dr. Norman's technique was more widely used as I believe it is the best and safest surgery for removing the affected parathyroid glands.

I look forward to hearing your experiences and thank you all in advance.

Hi and welcome to the forum,

Apologies for not replying sooner, for some reason I wasn't notified of your post, gremlins in the system !

We are familiar with Normans site and techniques, some have had success having travelled over there for surgery and some not, be aware that the operation is not always as easy as he makes out. For me it would have been an expensive mistake as my op turned out to be complex and took 4 hours, I hasten to add my surgeon was/is extremely experienced in parathyroid ops so nothing to do with lack of expertise.

Some of our members have had to have further surgery as adenomas were missed, this is one of the problems with the minimal op, if the glands are not in the usual position it can be very difficult or impossible to find and check them.

The other issue I have with the Norman speedy op and discharge is that of post op monitoring, there is none, if calcium levels drop you need to be monitored in hospital, I had very low calcium post op and thank god I was in hospital where it was dealt with. I would strongly recommend you stay overnight in hospital whichever method is used, better safe than sorry. There is no way I would have been fit for discharge 2 hours after surgery, I wasn't really in any fit state 2 days after ! and I'm an old hand at having operations so knew what to expect !

It is a bit strange you are seeing the surgeon first although if your Endo is typical of most there is no point in seeing them anyway ! many Endos know 0 about parathyroid problems.

Just realised you will have had your surgeon appt by now, how did it go ? where abouts are you ?

Keep us posted on progress and your decision on ops.

All the best
Nelly

Hi Nelly and thanks for your reply.

Well, I have, since last posting, been to see the surgeon and can say that I was not very impressed by him. He said that he would not be evaluating the other 3 glands, that he does do the minimally invasive procedure, he told me off for doing my research online and said that I couldn't believe everything you read on the internet. Then he went on to tell me that my calcium levels were "borderline" and were just slightly over and that all he wanted to do was monitor me. I challenged this and told him that my understanding was that although my levels were just slightly raised the adenoma had still been found on a recent ultrasound and that the more important thing to look at was the length of time I've had elevated calcium levels (since 2013 when I first had it brought to my attention), the duration was the key and that the longer it was left the worse my symptoms would become. He didn't like me telling him this and told me that if I didn't agree with his methods or his thoughts on my case that I was free to seek a second opinion. He said that I didn't fit the "guidelines" and that he picked his patients "carefully". He also went on to say that he works closely with the endo, that I will be seeing at the end of next month, and thought that she would agree with his point of view and would want to just "monitor" me. 

He has ordered a DEXTA scan, another ultrasound scan, (I am currently also doing the 24 hour urine collection and taking that into the hospital tomorrow morning) and he's also ordered the Sestamibi scan. I am concerned about the Sestamibi scan because they inject radiation into you. My particular concern with regards to this is because my mum had had thyroid cancer 20 odd years ago or so. We were told that it was a very rare form of thyroid cancer caused by radiation. Where she got the radiation poisoning from is unclear but in my family alone (on my mum's side) I have my mum's brother and my cousin (his daughter) that have also had thyroid problems and been operated on. Hence my reluctance of exposing myself to radiation just in case the thyroid is our family's weak point, if you know what I mean. Surely the ultrasound, together with my blood calcium levels and my PTH of 98 is enough evidence for the surgeon to see that I need the adenoma removing and not to be just monitored? 

I have also asked my GP to re-refer me to Mr Greg Sadler of the John Radcliffe Hospital in Oxford for a second opinion although I see, from his website, that he does the minimally invasive op without the IOPTH and sends his patients home within 5 hours of surgery. I would be travelling from Bedford (which is where I live) to Oxford and don't feel that, if he was to take me on as a patient, that I would like to travel straight back home post op because of the post op calcium levels dropping and causing problems. I'd rather stay at least one night in the hospital. 

What are your thoughts on this? I would welcome everyone's opinions please.

Thanks

Liz

Hi Liz

Oh deary me, I'm afraid to say your surgeons attitude is oh so common, I would definitely sack that one ! You may have better luck with Greg Sadler, I know some on here have seen him but I honestly can't remember the feedback. One that we can recommend is Fausto Pallazo in London if the Oxford trip proves a no go as well. My surgeon who is very experienced is in Bristol and he believes if calcium and pth are high an op is needed, he gets very annoyed at doctors who think monitoring is ok !

The scans are obviously a worry for you, although an ultrasound has shown a possible adenoma a surgeon will usually want a sestamibi to locate the position and to show if any others light up which may have been missed on the ultrasound. However scans are not 100% accurate anyway, both mine were inconclusive but my surgeon went ahead. You would need to discuss the scans with the surgeon but it's possible you will have to bite the bullet and have it done. If you have read the sestamibi page on Normans site you will see it is a very safe scan.

As I said above the speedy discharge after surgery is something I don't agree with although some on the forum have done it, not many mind. I know one lady was sent home same day, she was very unwell some hours later and had to go back in. Its not definite that your calcium levels would plummet post op and even if they do it's usually only for a short time and you would be given calcium tablets to correct it. My levels were rock bottom but after a week or so had crept back up much to the surprise of my surgeon as he was concerned he had removed my last parathyroid, I'd had previous thyroid surgery so possibly lost some then.

Hopefully you will get an appt in Oxford before your Endo appt as it sounds as if seeing her will be a waste of time anyway but you might as well get the dexa and second ultrasound done before sacking the surgeon !

This journey does usually take some time, many on here have struggled for years to get to the theatre doors so you are not alone, keep pushing and you will get there.

Nelly

Hi Liz
Welcome to the forum.
I have heard also that Greg Sadler does a minimal op without IOPTH. He was one of the first to offer the minimally invasive op in the UK.
Someone who worked with him in the early days, I believe, is Mr Fausto Palazzo who works out of Hammersmith Hospital on the NHS.
In your position, I would invest £250 in a private consultation with him and take along your US and blood testing results. You would then get his expert diagnosis and discuss the matter of the scans with him.
He was my surgeon and after an initial private consult he transferred me back to his NHS list for a 4D SPECT scan to try and locate an adenoma, but the scan was negative. I then had to wait 20 weeks for surgery on the NHS, but he is able to do bilateral surgery with IOPTH  and check all 4 glands through a minimal incision. He removed 3 of my glands two years ago and the scar is hardly visible now.
Ask us any more questions that you need to - Best of Wishes, Tigerlily.
PS I agree that the Norman Centre provides a lot of useful information on its website, but I know a number of people who flew out for surgery on the basis on this and were not cured. Luckily, Mr Palazzo is one of the most experienced endocrine surgeons in the UK and is able to successfully "mop up" and finally cure some of these unfortunate cases. His NHS waiting list is however quite long.

Hi Nelly and Tigerlilly,

Thanks to the both of you for your encouraging replies. Sorry though for the lateness in my reply but I don't often log on here as I'm more often on the Facebook 'Hyperparathyroid UK Action4Change' group for the more day to day updates etc.

Funny you should both mention Fausto Palazzo as I have booked a private consultation with him for 14th September. I have forwarded on to him all my blood test, ultrasound and 24 hour urine tests to date. My first ultrasound showed an adenoma 8mmx4mm and I have another ultrasound and dexta scan booked, at my local hospital, for next Monday 10th July. I have already spoken to a member of staff in the ultrasound department and she agreed to send all the images on to FP at the Hammersmith Hospital via their Image Exchange Portal. I asked them to forward it onto the Princess Grace Hospital but apparently they aren't part of the IEP network. I have yet to see the endo as my appointment with her is at the end of July but I’m sure, apart from me asking to have my PTH, Calcium and Vitamin D tested from the same blood draw, that the appointment will be a waste of time.

I've spoken to my GP and she is happy to refer me on to FP as an NHS patient. I'm not sure how long his NHS waiting list is but I will have to wait no matter how long it is as his good reputation precedes him as I have heard plenty of good things about him. I’m also looking forward to meeting him as he is a fellow Italian!   

Thanks once again for your replies. I really appreciate your helpful advice. 

Great news, Summersun, and I hope everything proceeds smoothly for you from now on!

Best of Wishes, Tigerlily.

Thanks Tigerlilly,

I will keep you posted.