MRI was a bust

The MRI  didn't find the adenoma that could be lurking in my chest. My endo in Dec said even if it was inconclusive he would send me to a surgeon , as the labs indicated hyperparathyroidism. Well he seem to have changed his mind and wants me on Sensipar which my insurance doesn't want to pay for, so doc is fighting with the insurance to get them to pay. jeezzzz Doc is stuck on a thoracic surgeon doing the surgery. He talked to one at UCSF and that surgeon was a little worried about temping this surgery being only sestamibi showed the ectopic adenoma and the venous sampling levels weren't to impressive. My endo said that the thoracic surgeon deals with bigger chest masses that are seen clearly on scans. So I mentioned how about one of the endocrine surgeons at least get there take on it. My endo who I trust is now turning into a endotwat. He just wants me on Sensipar for a few month and maybe try imaging again. So I am back in limbo land.  Take care all.

Oh Kathi, sorry to hear that - bummer! So disappointing. Are you going to try the Sensipar? I've been hearing good reports of people tolerating it OK and feeling much better as it brings their calcium down.

Jasmine x

Well, crap, Kathi, this is not good news! I am so sorry. Why does this all have to be so difficult? Why is this so hard for the doctors and surgeons to grasp?! I would imagine if it was they who were suffering, they would find a way to resolve the problem. Hopefully, someone will catch on and offer to help you. I am really sorry for the big disappointment.

Audrey

Well my insurance won't pay for it. My endo office called and my doc wants to talk to me tomorrow. I am sure it is about the sensipar.  I am not going to pay out of pocket at 700 a month, so he better just figure something out. I am still hoping he will send me to a surgeon if nothing else just a second opinion. I am stressed out and almost want to forget this whole thing. At this point I have the dx so what the hell do I need this endo for, I can't see anything else he can do for me. Sorry about the rant. I will let you know tomorrow after I talk to him.

I can feel how despondent you are Kathi, but don't give up, don't ever give up, just keep putting one foot in front of the other and keep edging forward. I know how hard the knock backs are to deal with, flippin' 'eck I'm Queen of the Knockbacks, but just keep going.....push your doctor to refer you to a surgeon. Maybe it's a good omen that your insurance won't pay for the Sensipar as its perhaps a bargaining chip with your doctor? "Sensipar's not an option, you can't leave me like this so send me to a surgeon". 

Chin up Kathi, and keep us posted.

Jasmine x

Okay I talked to my endo he told me he put in the appeal to get me on Sensipar and my vit D 25 was at 18 he wants it up a little more, I admitted that I slacked off of it. I did ask about talking to a surgeon, he told me that I am complicated case and to keep in mind that if the surgeon chose to explore  the surgery to take up to 6 hours and maybe for nothing and worse case would be exploring the chest and come up empty handed. Without a good imaging its a big risk. He said if sestamibi would not of shown anything he would of sent me on to a surgeon on labs only. The Venous Sampling did indicate it could be between the lower neck and deeper in the chest so still a little up in the air of where do you start. The thoracic surgeon he talk to will not use the robot type of surgery without knowing exactly where it is or approximately where. Doc said he really didn't want to see me go through a open chest surgery. So I told him am I just stuck. He tried to reassure me that I am not it will be resolved and that he will more then likely send me for more scans. So even tho I feel some what better I still am not to happy about it. Thanks everyone Chin up,, I will get there.    xxxx Kathi

Oh, this is so disappointing, Kathi - so sorry to hear of this.

If it is a case of more scans, perhaps your doctor will be able to suggest somewhere different to go when you have them done again. I'm sure that the skill of the scan operator comes into the equation in a major way and perhaps a different scanning operator at a different site might get a better result. Just a thought.

Sending through Love and Hugs to you whilst this gets sorted out - Tigerlily xxxx