New Member THE NORMAN CLINIC TAMPA

Hi,

My name is John and I'm helping my wife Julie who has hyperparathyroidism and has just recovered from an operation that failed to find the faulty parathyroid, and faces going through this all again without much confidence that this will resolve the matter once and for all and cure her.

We would love to contact anybody that has been to the NORMAN CLINIC in TAMPA or who are considering going there. We live in the North West of the UK and feel that we had the best available surgeon to do the operation. We just want to ensure that the next time is the last and Julie is cured! Any help would be much appreciated.  John.

Hi Johne and wife Julie, welcome to the forum,

We have a few members who have been to Tampa, both from UK and USA so hopefully one of them will be able to help.

However there is a top surgeon in London, Fausto Palazzo, who comes very highly recommended, one of our ladies is a very complex case and is currently waiting for a surgery date with him. We have a few people who have seen him and all have nothing but praise for him.

Although Dr Norman has a good reputation the speedy ops he does are not always successful and personally I don't agree with the surgery being done as a day case which is how Tampa work.

Was Julie's adenoma seen on the mibi scan but at the op not where they thought it was ?

My adenoma turned out to be in a different position than the scan showed and the op took 4 hours because it was so difficult, I can recommend the surgeon I had in Bristol but if you want the very best then I think FP in London is your man as he is the expert with the more challenging cases.

It can be a bit quiet on hear at times but do keep checking in for any replies.

Take care 

Nelly

Hi Nelly,
Will give a detailed response later when I'm at home with Julie
Cheers Johne

Hello John

Here is a link to the complex case that Nelly mentioned:
https://hyperparathyroid.forumotion.co.uk/t601-huge-fingers-crossed-for-jasmine-for-tomorrow#7989

Edwin

Hi John and Julie,
Just wanted to say hello and wish Julie all the luck in the world in finding a cure, it must be a real knock back to have surgery and still have symptoms again.
Sue

Thanks for that Sue,

We have had our meet with the Endo Surgeon today who explained to us what he wanted to do now to resolve "Julies Para Problem".

He wants to do a probe in the vein to locate the dodgy parathyroid won't go into detail here but you probably all know the procedure.

The big decision that we have is:

A) Do we stick with this guy? and let him have another go, by the way and I will not mention any names here, he is a top guy in this field
B) Consult another UK Surgeon as mentioned in an earlier post 
C) Catch a plane to Tampa.

Any thoughts? Johne & Julie

Personally Johne I would save the air fare and stay put in UK, if you have a top surgeon and have confidence in his ability to fix Julie then stick with it, do you accept his reason for not finding it first time round ? and are you comfortable with his plan for second attempt ? 
There are never any guarantees with this op, some people are100% better afterwards and some not but the skill of the surgeon is vital in trying to get the best outcome.
It is a difficult decision for you both, if you have doubts a second opinion would be a good move, maybe see what the tests show and go from there.

Nelly

Hello Johne and Julie

I agree with Nelly that you might save the air-fare for the moment and perhaps try and get a second opinion here in the UK. Julie - so sorry to hear you are going through the mill at the moment.

Sometimes these pesky adenoma fail to show up on nuclear scans, even when they do reveal themselves on ultrasounds. This was my case. I was unable to even get a diagnosis locally (Suffolk) so I paid for a private consult with Fausto Palazzo at the Princess Grace Hospital in London at £250 (near Planetarium, Baker Street tube). He is probably the main man in the UK for difficult cases. He diagnosed primary hyperparathyroidism due to an adenoma and then was kind enough to transfer me back into his NHS clinic at the Hammersmith. From there, I waited 20 weeks for surgery, but you could short-circuit this by paying privately for the surgery (about £7k, I believe).

It turned out I had primary PTH hyperplasia of 3 glands, one of which had already grown an adenoma. I have been really pleased with the post-surgery result. I feel 200% better than I did and my Calcium and PTH levels have normalised. I never had such a "normal" serum calcium level (2.37) as I have had recently!

Personally, in your situation, I would have a private consult with Fausto Palazzo for a second opinion (private sec is Sophie on 020 7100 8086). This is for speed and reassurance for Julie, who must be feeling terrible, and an appointment could be as soon as next week, if he is currently in the UK. Take all your paperwork with you and see what he thinks. Then you will have more information at your fingertips to decide what to do - stay with your current surgeon (who does know the geography, so to speak) or transfer to Mr Palazzo.

You might also gain some extra thinking time if Mr Palazzo feels that surgery with anyone again so soon is not such a good idea.

I hope other forum members who have had experience with Mr Palazzo might hop on here and give you their view. He is a compassionate man who wishes to help, and he knows how badly this disorder can affect one's quality of life.

As Nelly says, there are no guarantees with the operation and in my case there appears to be some other matter "sitting behind" the parathyroid thing - although I am well pleased not to be spending my twilight years cultivating 2 more PTH adenoma in the hyperplastic PTH glands that the surgeon removed! 

Fausto Palazzo told me that the op to remove abnormal parathyroid glands involves only medium anaesthesia and in skilled hands is straightforward and simple surgery - but the caveat there is "in skilled hands". And it is very difficult for the patient to be able to decide whose hands are the most skilled. Which is why we are so grateful that Nelly and Edwin were able to continue the functioning of this forum, where we do have access to numerous opinions on this subject.

You and Julie are welcome here - do please keep us posted on developments and members will do their best to help in any way they can. We are really good at cyber hugs, by the way! And I'm sending a very warm one to Julie right now!

Best of Wishes from Tigerlily xx

Going in for my op tomorrow with Mr loughran at Salford. I'll let you know how I get on