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New member - update

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New member - update

Post by Fleur on Sat Aug 06, 2016 5:47 pm

Hello again

Just updating on my message on "new member introduce yourself" topic.

I've now been to see endo who was lovely man. He's a professor specialising in metabolic bone disorders & said I definitely have phpt so I feel really pleased that I have a diagnosis & am am not going mad. He's sending me for a dexa scan & ultrasound & referring me to surgeons. Has anyone else had surgery in Norwich? He said they did about 200 parathyroidectomies last year. I don't know which surgeon I will see but I know one of the breast surgeons also does minimally invasive parathyroid surgery. I have had previous neck surgery for a reactive lymph node 24 years ago so hope that won't complicate things.

Would love to have some advice from someone if you have a minute.

Regards,
Jenny

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Re: New member - update

Post by Hadleigh on Sun Aug 07, 2016 8:16 pm

Okey doke, well great news you have stumbled upon a nice Endo, that's half the battle. Now the ball is rolling you should hopefully be on the surgery list fairly soon. It sounds as if they are very experienced with pth surgery which is good.

As you have already had neck surgery they may not be keen on the minimal op, scar tissue can make it a little more tricky, I had thyroid surgery many years ago so my op was a tad challenging for my surgeon.

Have they mentioned a sestamibi scan ? this is normally done to locate the adenoma although sometimes they don't show very well on either scan, this happened to me but my surgeon was happy to go on a search and destroy mission anyway.

I can't remember if any of our members have had surgery in Norwich, we do have a list of surgeons on the forum so you may find one from Norwich.

Not really much advice I can give you as it sounds as if everything is being taken care of, hopefully you won't have to long to wait for the scans and appts. The op itself is usually very straight forward, some do it as a day case, others an overnight job which personally I think is better, there is no way I would have been up to going home the same day as my calcium and pth hit the floor afterwards so I needed to be there.

Some feel better immediately, some take longer, some symptoms go and others might linger for a few months, my surgeon told me the best he could promise would be a lower calcium and anything else would be a bonus. I won't lie, it did take me a while to recover but I got there.

Do keep us posted on your journey towards surgery and any questions you have, just ask, sadly the forum is very quiet these days, everyone is better and off doing other things ! so you may be stuck with me but you never know someone might look in and say Hi Smile

Good luck and take care.

Nelly
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Re: New member - update

Post by Fleur on Mon Aug 15, 2016 12:27 pm

Hello Nelly

Thank you so much for your reply.

I have noticed that the forum seems to be very quiet these days. I had looked at the old forum when my GP originally told me about hpt (which of course I'd never heard of) in Sept 2013 when it was already closed to new members. Then of course thought that I had vit-d deficiency so didn't pursue it at that time. But when I found you again this time I was really pleased to see some of the old names I remembered; like you and Tigerlily, Audrey and Jasmine. 

Any way, back to your message. You were right - I'm having a "parathyroid scan" which I think is a sestamibi scan on 23rd Sept. I had my bone density scan on Thursday and they said the Endo will write to me with those results. Don't know if they'll do an ultrasound as that was just what I'd assumed when the endo said scan. I probably got that wrong!

I hope the ducks are doing well! (And you & Edwin of course!!)

Jenny

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Re: New member - update

Post by Tigerlily on Tue Aug 16, 2016 11:01 am

Hello Jenny!

So good to get your update over on this forum and to hear that they are on the ball for your in Norwich! 

I'm down in Sudbury in Suffolk and don't have any experience of the Nor-folk as regards PHPT, but as you have had previous neck surgery in your place I would try to ensure that your surgeon is one who is well experienced in PTH surgery - and not just someone who does it as a sideline to something else.

Have a look at the BAETS List that Nelly has posted in the Useful Information section on this forum to see who does the most PTH surgery in Norwich - and good luck with the sestamibi scan - let's hope it shows something.

The surgery itself is quite straightforward when undertaken by an experienced PTH surgeon. Nelly is right that an overnight stay is preferable to leaving the same day. Not that you get any sleep in hospitals at night! Earplugs and an eye-shade are to be recommended.

Keep us posted on how things go, and ask any more questions that you need to.

Nice to "see" you again!

Love from Tigerlily xxx

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Re: New member - update

Post by Tigerlily on Tue Aug 16, 2016 11:19 am

Oooops, Jenny - I have just looked at the BAETS Members List of PTH surgeries performed in 2014 (the List published in 2015 - here: http://www.baets.org.uk/audit/) and there is only one person listed for Norwich that I can see: Peter Tassone, and he only did 8 PTH surgeries last year. Not enough to be experienced in it, in my own view.

If someone told you that they do 200 PTH surgeries a year at Norwich, it might be a good idea to ask that person who is doing them, because they do not appear to be on the Member List of the British Association of Endocrine and Thyroid Surgeons, which means that they may not be actual endocrine surgeons.

Please be very wary of putting yourself in the hands on an inexperienced operator - I cannot stress this enough.

Love from Tigerlily xxx

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Re: New member - update

Post by Hadleigh on Tue Aug 16, 2016 1:46 pm

Hmmm, looking at the 2015 list of surgeons, FP did 155 last year so I'm thinking 200 for Norwich might be a little overestimated, I would definitely check this, they may have done 200 endocrine surgeries but I would be very surprised if they were all PTH ops.

Nelly
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Re: New member - update

Post by Admin on Tue Aug 16, 2016 1:51 pm

I have added the 2015 list to our reference section along with an outcome search by surgeon or hospital.

Reference section - BAETS lists and search
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