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Update on venous sampling

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Update on venous sampling

Post by Kathi209 on Thu Dec 18, 2014 3:55 am

I wrote a long post this morning but it is lost in cyber space. I will try it again.

My endo talked to the IR Dr Dowd, He stated that the gradients were not to impressive but he thinks the two samples which showed the modest elevations are suggesting the presence of adenoma nearby- either very low in the neck or in the mediastinum [ chest]  so endo said we will revisit the mediastinal adenoma issue. He said it not a 100% surgical procedure will find the adenoma. He said he will get additional input from my endocrine and surgical colleagues. He said I don't want to commit you to a open chest procedure if there is a strong possibility that it will go for naught, but I would like to deal with this if we can.

Sooooo it does sound better but not clear cut. I am really glad he is going to talk to a surgeon on my behalf, maybe surgeon will know better what to do next. I will have to think long and hard about the open chest op. I know from what I have read about UCSF surgeons they do have the di vichi robot [ spelled wrong] and VATS they could use. We will see, maybe one will say he can find it with a neck incision. Really getting worried. I can not believe UCSF does not have a 4D scanner, Okay my para peep I hope this one doesn't get lost. Love to all Kathi

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Re: Update on venous sampling

Post by Jasmine2 on Thu Dec 18, 2014 7:42 am

Kathi, that's sounding a little more positive and you're making some progress - but oh so sloooooowly, it must be like pulling teeth for you! I know the feeling having had this cr*p drag on for me for so long! Still, I'm seeing FP today, as you know; interestingly, that's the exact location that my adenoma has been reported in - very low neck or mediastinum. If FP agrees to surgery I'll ask him what approach he will use (neck or chest) and let you know. To be honest, I feel so unwell now I couldn't care less if he tunnelled up from my big toe, I just want it out! Hang on in there Kathi, baby steps are better than standing still.

Jasmine x
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Re: Update on venous sampling

Post by Brigitte0 on Thu Dec 18, 2014 8:53 am

Kathi, as Jasmine says, baby steps are better than no steps at all and it's really encouraging that they want to get you sorted out. I hope they don't keep you waiting for too long before they decide what the best option is to proceed. It's easy to say, but try not to worry too much whilst you're back in a bit of Limbo Land there. I shall keep my fingers and toes crossed for you as well as Jasmine. Take care of yourself. 

Love and hugs 

Brigitte xxxx
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Re: Update on venous sampling

Post by Tigerlily on Thu Dec 18, 2014 12:20 pm

I think that's great news, Kathi! You are so much further forward now than you were and you have someone who has on the responsibility to discover how it can continue to be investigated "going forward" (as they say in these circles).

That's a result in my book. And the similarity between your case and Jasmine's is remarkable, so you will be able to buddy up with her the rest of the way.

It sounds as though your hospital has some sophisticated equipment they could use (as long as they have an equally sophisticated and experienced operator). Don't worry about the 4D scanner- two of my adenoma that were in the right place at the side of the thyroid didn't show up on the 4D scan - and neither did the one that had shown up on US.

You're really lucky if these things show up on US as that then shows things are headed in the right direction, but there's no logic to the scans thing, in my view. Some adenoma are just plain shy about their photo shoots!

Keep us posted, Kathi, when you hear what the next step will be.

Love from Tigerlily xxxx

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Re: Update on venous sampling

Post by Little Audrey on Thu Dec 18, 2014 11:26 pm

Yes, indeed, baby steps are much better than no steps at all!! This post does sound much more encouraging, Kathi. It sounds like you're getting closer and closer!! Praying that your time of being well again is not far off now! Stay strong!

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Re: Update on venous sampling

Post by Kathi209 on Fri Dec 19, 2014 12:00 am

Thanks all, I do so hope one of the surgeons he talks to will make it sound like no big deal I can do it easy peasy. I did drop Dr Duhs name because he is supposed to be the best and the Chief endocrine surgeon there. Moving forward as we say. Love to all. Kathi

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Re: Update on venous sampling

Post by pilipala on Fri Dec 19, 2014 7:28 am

Hi Kathi,

I'm really pleased they haven't dismissed pHPT out of hand and really hope you can find an excellent surgeon who will take on a chest adenoma with skill and care. 

Hoping the baby steps turn into a sprint to the finish line for you!

Lots of love,
Dee
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