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Seen endo today

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Post by Kathi209 Wed May 28, 2014 1:46 am

Well I do have a diagnoses of phtp cal/ 10.7 and pth 99. but I guess I am more complicated then I thought. I had a sestamibi scan last year that said adenoma was in my superior mediastinum meaning my chest but not in the thymus but deeper in the chest, MRI could not find it so I figured that was ruled out endo said it still could be in my chest. That would call for a different type of surgery, the surgeon could not access it thur my neck, so exploratory surgery of my neck would not be successful if its in my chest. So he told me in my case finding the bad gland is very important so I don't end up with 2 separate surgeries. He said he was going to talk with a couple of surgeons on my behalf. He wants another dexa and more labs and my next appointment he will set me up for venous sampling to try and locate the adenoma. So then he tells me to come back in 6 months. I am like WHAT 6 months . He said if my symptoms are worse of course I could come in sooner. Not really happy about that, but slowly I feel I am getting somewhere, so its all good.    Finely Tigerlily and I are getting some answers. I bet you guys a dollar she has surgery before me.

Kathi209

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Post by Little Audrey Wed May 28, 2014 3:31 am

Wait 6 months???!!!!! What is wrong with these doctors?! Again, if it were they who suffering, I'm sure things would move along a bit faster! I'm happy they are opting to be cautious since your case is a little more complicated than most, but I don't think they need 6 more months! If I wasn't so old, I'd go to medical school and become a parathyroid surgeon now so I could cure all of you At least you have the diagnosis! That is a HUGE step!! Hang in there, and, hopefully, you won't have to wait 6 more months!

Audrey

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Post by Amanda Lynne Wed May 28, 2014 7:27 am

Oh Kathi why 6 months that is ridiculous they've confirmed you have this disease why don't they pull their fingers out and get the right tests sorted and an experienced surgeon for you. Keep fighting at least you are on the way, even if it's the scenic route.
Love Amanda xxxx
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Post by Brigitte0 Wed May 28, 2014 8:27 am

It must feel good to have the diagnosis Kathi, but 6 months, wow  Shocked  As Amanda says, you are taking the scenic route! It's a pity they can't get themselves into gear, but on the other hand, there's no point offering you surgery and then not being able to find the adenoma. Keep strong, Kathi and you'll get there in the end. You never know, you might find that some doctor gets terribly interested in your case and hurries it along. Best of luck! 

Love 
Brigitte x
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Post by Kathi209 Wed May 28, 2014 10:54 pm

Thanks everyone, it will be a long wait, could be a insurance thing because doc was kind of talking to himself  saying  lets see you just had some scans done last oct and nov  should wait till after nov. he could be thinking of another sestamibi also we did talk about the last one being cut short because they seen something light up in my chest so only had the first 30 minutes. I need to speak up more when I see him, but my brain seems to go dead when I'm sitting there.

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