Huge "Fingers Crossed" for Jasmine for tomorrow!!

Hi All

Just wanted to put the flags out for Jasmine's meeting with FP tomorrow about hopefully removing the remaining pesky little PTH-punk that has been seen lurking!

All love from Tigerlily xxxx

Aww thanks Tigerlily.....I'm a bit nervous as there's a lot riding on this one. It's taken 14 months since I first saw him to get to this point!

I'll keep you posted....watch this space!

J x

Hi Jasmine,
Just wanted to add as well that I really hope everything goes well this afternoon and that finally he will find it and get it out, thinking of you and good luck!
Hugs from Sue x

Safe journey, Jasmine - take taxis in case the tube strike is still having an effect - 

- and no sneaking off to The Ritz without us!

We'll be waiting here to hear how it goes.

Love and GBH from Tigerlily xxxx

Good luck Jasmine I've got everything crossed for you. 
Sending much love Amanda xxxx

Thinking of you today!

Love and hugs,

Dee
xxx

Just a quick note tonight, more tomorrow, but just to let you know that the man from Hammersmith said "yes"...... feeling emotional! 

  Great news xxxx

  Well done Xxxxx

Woo woo woo! A good day for phpt patient progress. 

Really hope this is the beginning of the end of your parathyroid issues Jasmine.

Love
Dee

Jasmine, I am sooooooooooooo pleased for you! I can't say how much.

This PTH situation has been absolutely relentless for you and I have no idea how you have been able to go through it. A lesser person (me) might have given up by now.

Bless you, mi Chook (local patois common to us both!) and let us have all the details as soon as you are ready to post.

It's a wonderful day!!

Love from Tigerlily xxxx

Attention! Extremely long post alert ........!

So here I am, full description of my FP appointment to follow.....quick recap - you will recall I had my thyroid removed in 1996 and the stupid surgeon buggered my left recurrent laryngeal nerve leaving it permanently paralysed, subsequently developed pHPT, had my first PT surgery with Mac the Knife which was an epic fail as he took out lymph nodes by mistake, he told me that no other surgeon in the UK would touch me for another PT surgery because of the risk of 'catastrophic complications' to my one remaining RLN, so I took myself off to the Norman Parathyroid Centre in Tampa where a large adenoma was removed. Unfortunately one was also missed.....which left me with persistent disease. NPC wouldn't accept me for a third PT surgery so I started all over again, trying to find an experienced re operative parathyroid surgeon here in the UK who would agree to help me. 14 months ago I beat a path to the doorway of one Mr Fausto Palazzo ....and here I am a 4D CT scan, ultrasound, venous sampling, parathyroid angiogram and Dexa scan later, plus in the meantime three months waiting on genetics results for FHH, three months course of Vitamin D followed by three months on Cinacalcet, and I arrived at FP's door on Thursday for the final showdown appointment.

I can't tell you how relieved I'm feeling to finally have some light at the end of this very long tunnel. Fausto Palazzo was kindness epitomised ....so compassionate and understanding. It was a long meeting which started off with him saying that all the tests, scans and observations I had undergone with Dr Cox has convinced him I do indeed have persistent pHPT - he said there was an element of doubt that he needed to have removed before considering such a risky surgery because the pathology report from NPC wasn't absolutely clear it was an adenoma removed - it stated parathyroid tissue not adenoma, so even though the letter from Dr Norman stated it and the photo showed the adenoma he wasn't prepared to run the risk of operating in my case if there was even the slightest chance the diagnosis was wrong, and he could potentially make things worse for me in performing unnecessary surgery. So, in terms of the risk in percentage terms he said he couldn't even quantify it in my case as he has never had a case like mine before. He said he has thought about my situation at great length, that from all my results he has a good idea exactly where the adenoma is, but that it's going to be buried in scar tissue that he will have to wade through, and these are the risks he has identified: firstly, my one remaining functional recurrent laryngeal nerve could be damaged causing me to permanently lose my voice, and even result in a temporary tracheostomy; secondly, we don't know exactly how many parathyroids I have left as one or more could have been removed with the thyroid so I could go hypopara; or he may not be able to find it. He said in making his decision he had to ask himself three things; do we know where it is - yes we do, does he think he can remove it - yes he thinks he can, and can he remove it safely, and yes he thinks he can. He said he has never yet had a patient lose their voice after surgery, and doesn't want to start now, but he is prepared to do the surgery as long as I'm fully aware of the risks involved, and having thought about it long and hard, and having got to know me over this past year and how this has affected my life, he doesn't feel I would get any closure by being managed medically on Cinacalcet for the rest of my life. I replied that, although yes I do feel much better on cinacalcet I wouldn't be able to reconcile myself mentally to medical management because in my head I would know I still have the disease with all the associated risk factors of bone disease, heart disease, stroke, kidney disease etc, and that cinacalcet wouldn't stop the progress of the disease. He agreed with me, and I said after all I've been through I feel I owe it to myself, and my family, to at least try and get myself better. If it fails again, then at least I will know I've done all I can to be cured and will perhaps then, and only then, be able to come to terms with medical management. But I'm not going there....I WILL get my cure! So, the next step is that he will discuss my case at his MDT meeting in the next week or two and plan for surgery, which all being well should be in the next four to six weeks. It will definitely be at the Hammersmith where he will have all the best surgical facilities to hand and when I asked if he would be doing nerve monitoring and ioPTH he said of course, we need to be throwing everything we've got at it......you've got to just love him!

Phew! That was a monologue......but I guess the moral of the story is never give up hope! Dr Norman may have written me off but I have my saviour in FP! Will let you know when I get my surgery date.

Jasmine x

That is such good news, Jasmine.

Just as you say, if you don't go for it you will never feel that you did everything you could to get well.
And you have the right man for the job. I'm so glad he has treated you well throughout all this time, with kindness and compassion, and great skill, as we shall surely find out when this is all over for you.

And that nerve monitoring technique is just amazing. A holiday acquaintance in the US told me about it. Apparently an alarm goes off if the surgeon gets too near to the nerve.

OMG - You could be skipping about like a Spring lamb come Christmas!

Never give up hope, just as you say. Baby steps for now until the op; pat all available dogs; get yourself as fit as you can before surgery; and (just for now) keep taking the tablets.

Let us know when you get the date, so we can all line up behind you and send you the best vibes on the day.

Lots of Love from Tigerlily xxxx

I am just now getting back on here.  Can't seem to get on nearly as often as I'd like!  : (

Jasmine, this is such WONDERFUL news!!!     I agree that it is about darned time someone has offered surgery to you for a final cure!    My goodness, you certainly have been through the mill!      So VERY happy for you!!    Can't wait to hear the actual surgery date.    

Love,
Audrey

Yay yay and thrice yay 
This is brilliant news Jasmine at last you can see the end of the long tunnel of c**p you have been through. I'm so pleased for you, hold on that little bit longer and you will get your health back to how it should be and you can go on and live your life again.
Lots of love and biggest hugs, 
Amanda xxxx

Such, such good news, Jasmine - I'm oiling that ole Limboland Cafe door for you so it swings open and propels you outta there fast!!

I have the utmost faith in FP. Whatever it is he will identify it, I'm sure. And if its a pesky punk adenoma he will remove it.

Off now for a dig in the back of the wardrobe to see what I've got that is Ritz-worthy for the New Year!

Keep us posted - Love from Tigerlily xxxx

Great news Jasmine, hope it all goes smoothly and to plan, end of the long road is in sight 

Nelly

Could not be happier for you, Jasmine!!!      All I can say is, IT'S ABOUT TIME!!!!

Love,
Audrey

Dear Jasmine..I am longing to read how your surgery worked out. You have been through so much. I have been trying to make a decision where to go which surgeon to choose.
I am 83 years old and was considering finding the money to go to Tampa but the 9 hour flight worries me. Now I have read your story maybe Tampa not the right place to go if my problems turn out not to be straight forward. I live in France , I am English but would not be able to have an op done on the NHS even though I was a NHS nurse all my working life.
Cannot find any sort of info or forum in France re this problem so would have to go to London and find a way to pay.
Please let me know how your surgery went my very best wishes Zeena