4D CT scan - the results are in.......

A glimmer of hope at last ........! Just had an email from FP in which he said "the 4D CT has raised the possibility of another adenoma on the right. If we can confirm this with venous sampling (which I am arranging) then we can discuss a re-intervention". I've been waiting for a little bit of good news for so long now that I didn't know whether to laugh or cry - so I did both! I don't relish the prospect of another trip to the Hammersmith for the venous sampling (it was the trip from hell for the scan) but what the heck, bring it on, let's get on with it.....

Jasmine x

Yay !   (that's Lots of Love!)

Jasmine - such grrrrreat news!!! I'm laughing and crying here with you!

Yessss, that man! He was working methodically through his in-tray after all this week!
I do love a methodical man!!

So pleased for you, Jasmine, just so pleased!     The Ritz is coming back into view!!

Lots of Love, Tigerlily xxxx

Hi Jasmine
This is brilliant news I'm soooooooooooooo pleased for you
I know the trip is a pain and you probably aren't looking forward to the venous sampling (I'm not surprised) but hopefully it will show it up and you can get the little bugger outa there.
Lots of love and now have a great weekend.
Amanda xxxx

Hi Amanda

Just thinking aloud here, but does Jasmine's result mean that you can have both FHH and pHPT at the same time?

Or does it mean that the genetic test for FHH is not always accurate?

Lots to think about!

You have a good weekend, too, and we'll be toasting Jasmine's result with something appropriate tonight.

Love from Tigerlily xxxx

Hi Tigerlily
I think Jasmine's FHH result came back negative, I'm the only saddo with both I think  .
Yes I'll be raising a toast to Jasmine getting that cure she so deserves.
You have a good weekend and don't wake up with a hangover from doing too much toasting 
Love Amanda xxxx

Sorry, Amanda - yes, Jasmine's just put me right on that as well - I'm often a potty old duck these days!!

I still think that you have another adenoma, though, my Dear - both, as you say.

But bottoms up and "chin-chin" for now - Love from Tigerlily xxxx

Not quite sure what to put up now Tigerlily, bottom or chin(s) 
A xxxx

Bless, Amanda! T - xxxx

Jasmine

Great news. Moving forward one more hurdle to go. I know I see my endo Monday and driving to the bay area in California is hell . Hope you can get the VS soon.     Best wished Kathi

Hi Jasmine

I am so happy for you.   The team at Imperial is, in my opinion, head and shoulders above everyone else and they are very research focused too.  Mr FP's department at Hammersmith is part of the team at St Mary's where I go (also Imperial) and I know they all meet up regularly together to discuss the latest patients/research.

They must be wondering though why they are getting so many patients from all over the South East and beyond.  However, as I understand it, the money follows the patient these days so we are all definitely adding to their income.  I felt that I had hit the jackpot when I first went to the clinic and I remain very happy with my treatment.

At the moment I am anxiously waiting for the results of pancreas and piturity MRIs on the 1st December.   In the meantime, after successful para surgery (second operation) I am enjoying my new found good health, including blissful sleep all night long.   Yeahhh.

I hope you all have a good weekend and for those who haven't been feeling too good, that you will soon see some signs of recovery.

Anna

What great news Jasmine!! I'm really pleased for you and hope that the venous sampling can be arranged soon so that you can get it over and done with  

Love and Very Many hugs 

Brigitte xxxx

Oh, my gosh, I too am jumping for joy for you, Lyn!! FINALLY some promising news!! I am so darned happy for you! You have been suffering for so long and waiting for so long for a chance for a normal life. I think your time has finally come!! So VERY happy!!!

There seems to be quite a bit of good news on here lately. For those of you who are still praying for a bit for yourself, hang in there; it will happen!

Audrey

Ohhh Jasmine,
I have just got in and reading all the posts, am so pleased for you, real progress and one step closer to being well again.
Hugs Sue x

Hi Jasmine,

So happy for you and good luck with the PVS that is how they found mine in the chest at my local hospital, then i was referred to FP.

Jasmine do you mean on the right of your neck or chest, i can't remember where they thought it might be in your previous post! ( i have a terrible headache at the moment and can just about think!)

Once again congratulations and if you need any advice about the PVS don't hesitate to ask.

Take care

Diana x

Thanks all for your kindness and good wishes! Not quite there yet, have to get the scan results backed up by venous sampling as Mr P is indeed very methodical and a belt and braces man, but it is VERY encouraging that the CT has picked up another adenoma.

Diana, until I get his letter containing all the details I have no clue whereabouts on the right it is, be it neck or chest, but I think the significance of him telling me it's on the right is because that's the side my laryngeal nerve is paralysed, and had it been on the left near my one remaining functional laryngeal nerve, surgery would probably be very much more risky. I don't know, I'm just surmising this - all will become clear but for now I'm content that he has actually mentioned further surgery as a consideration. I'll take you up on your offer of advice about VS when I get a date, thanks Diana.

Jasmine x

Well I made a right booboo in my last post which has negated my assumption about left and right! Even though I've had a vocal chord palsy due to nerve damage for the past 18 years and never got confused about it before, it seems I got my left and right mixed up and FP's letter and referral to the consultant interventional radiologist reminded me that I have a left sided paralysis not right sided. I can't believe I mixed that up as it has had such significance over the past few years! Grrrrrr .....brain fog! Pft.....!

Anyway, I'm having venous sampling with Dr James Jackson at the Hammersmith. His PA originally made the appointment for 27th November but then she emailed me to say in his reply to FP he said that, based on the 4D CT results, I would need to have parathyroid angiography as well as venous sampling, that this will require an overnight stay and she's not sure he can do this on the 27th, hence pencilling me in for 4th Dec. He's off this week so she will speak to him on Tuesday and confirm the date with me.

I've also now received the CT report, which gave me a bit of a gliff! It seems the adenoma is in my right neck, 'intimately related' to the common carotid artery as it passes behind the right side of the trachea - I'm assuming this means it's attached to the carotid artery? Eek ....! If this is the case, no wonder FP is being so cautious and meticulous in his approach to localising it. He said in his letter "only a high degree of confident localisation will enable surgery". 

So.....clearly I'm not there yet, but I do feel that FP is doing his utmost to try and help me. I have put my faith and trust in him .....all I can do really.

Jasmine x

Gosh Jasmine you don't do things the easy way do you 
Thank goodness you have such a wonderful Surgeon going to his best to get this b****y thing removed from you.
He does sound as though he is covering all bases to make sure he has pin pointed exactly where it is down to the smallest degree which will make for a much smoother operation.
I think you are right to trust him and I'm sure he will take very good care of you.
I'm glad they didn't move the venous sampling and angiogram too far back I'm sure when this is done and you get the go ahead for op you will be nearly there.
Love n hugs Amanda xxxx

It was probably bound to be a bit complicated after all you've been through, Jasmine! I'm so glad you're in good hands with FP and all at Hammersmith because you know that everything is being done in the proper way to pinpoint the blasted thing. I seem to have read that a fair few people have had adenomas involved with the carotid artery in some way, so it's very positive that such an effort is being made to identify its location to the last degree. You are right to trust FP because he's doing his utmost to help you with his very professional approach. I feel comforted on your behalf! 

Love and Very Many hugs 

Brigitte xxxx

Oh, my goodness, Jasmine, as Amanda said, you certainly don't do anything simply, do you?! Geez! At least you are on your way, and things are looking up for you! I can't wait to hear the results of the venous sampling and the angiography. It sounds like the doctors know what they're doing this time around! So very happy for you!!

Anna, I just noticed your post. Don't know how I missed it earlier. I just wanted to say that I am also very happy to hear your second surgery was successful, and you are now enjoying life again!! It is always so nice to hear of these success stories! So very happy for you!

Audrey

Hi Jasmine,
I can totally understand his caution in having it absolutely pinned down location wise, especially as it is on your good side.  I too think he is very methodical and I would happily put my trust in him to operate on me, if I ever get out of the starting blocks!  Good luck with the venous sampling, at least they should know which area to go to first.  I am totally confident that he has the skill to get you sorted and well again.
Hugs Sue x

Hi Jasmine,
I always get my right and left mixed up.
I'm sure JP will get your sorted, he came across as being very confident about my surgery even though it's in the chest and he was very straight forward about the risks.
You are in excellant hands and I am so pleased that things are moving forward for you, after all you been through, you are one tough cookie!

Take care

Diana

Xx

Thanks all! Will keep you posted; feeling positive despite the anxiety.

Haha Diana, don't know about being a tough cookie - tough old boot more like, at least that's how I feel, like a gnarly, shrivelled, weather beaten old hobnail. When I emerge from all this it will be as a diamanté encrusted Doc Marten special ....lol!

Jasmine x

It will be great to see those dancing on the tables at the Ritz, Jasmine!

Always get my left and right mixed up myself - think it must be a symptom of pHPT.

Deep breaths and a bit of meditation - they will keep you going until December - hang on in there, girl.

Love from Tigerlily xxxx

Hi Jasmine

It looks like things are moving along for you. Is the angiography a separate procedure or is it used at the same time as the PVS. I have read some about it but kind of confusing to my foggy brain. I received a call from UCSF on Friday just to tell me the nurse would call on Monday to get some health and medication info. So maybe tomorrow I will have a date on mine. Its seems FP is covering all the bases, which is great. I do an update when I hear.  hugs Kathi

I think it's all done during the same procedure Kathi, just takes longer and maybe a little more invasive (not 100% certain on that), hence the requirement of an overnight stay in hospital. Hope you hear something good soon Kathi, be thinking of you.

J x