Gen surgeon calls tomorrow

You might ask for a 4D CT. The surgeon can examine the four glands during the procedure, but the exploratory method seems invasive.
Not a question for the general surgeon, but it may be best to find a parathyroid specialist for the surgery rather than a general surgeon, even if you have to travel.
Best wishes for you surgery.

Can't tell you what to do, from what you say, I have the same thing for four years and they are doing only watch and wait.
I am told the surgery is no big deal.

@musicbart I know very little about parathyroid glands and looking through the findings of your nuclear med scan made my head spin. BUT I know I have seen good discussions here regarding parathyroid conditions and treatments that might be helpful to you. Try searching on key words like parathyroid and see where that takes you. Two things come to mind. There is a center that specializes in parathyroid issues. I think it is called the Norman Center (in Florida I think). The other one is a member @riflemanz64 (I think) that has lots of experience with parathyroid conditions and has posted a lot of information. Hope this leads to something useful for you. Keep us posted?

Just reading their website https://www.parathyroid.com/ is advantageous.

Hi @musicbart - thanks for sharing your scan results. I have had three parathyroid surgeries over the past 15 years due to hyperparathyroidism from a MEN1 gene mutation. I have 1/2 of one remaining parathyroid remaining and am stable at this time.

I agree with @gently that a 4D CT would be helpful as I have had several of them to monitor and/or assess a plan of action. I would also choose a surgeon carefully as I read that hypoparathyroidism can be really difficult to manage if the surgery is not performed by an experienced surgeon.

Happy to help if you need anything!

Take care,
- Matt

No way I’d let a general surgeon look for these rice size glands. You want a specialist who only does this type of surgery. I told my wife she’s going to Florida to the Norman parathyroid hospital if I have to drag you on an airplane and she did listen to me thank God! She had 3 removed thru a less than 1” incision. Two doctors were present for her surgery and it was the best surgery she ever had. 6 hours later we were back in the hotel room eating lunch and the next day we flew home. We had a great time and still talk about it to this day. My advice is head to Florida and stay away from a general surgeon. My wife is cured from this terrible disease.

It's great news riflemanz64 that all went well for your wife in the Norman parathyroid surgery center!

I did get that phone call last week from the surgeon whom I thought was only a general surgeon. But she told me "No, I'm a specialist in parathyroid surgery .... " (and in some other kind of surgery). She told me she reviewed the 2 older scans I had earlier this year (the CT and the US scans of my parathyroid glands area) plus the recently done nuclear medicine scan. I was somewhat surprised when she said that none of these 3 kinds of scans reveals which is the haywire gland! Still, she said I could have surgery by her if I wanted it OR I could continue to just wait and watch. It still seems to me that if a surgeon doesn't know from scans which is the bad gland, then it would be dangerous to have that surgeon cut open the neck to look at the 4 glands trying to figure out which is the abnormal, sick one. Now maybe in the case where scans aren't useful in revealing which gland has to be taken out, maybe the surgeon sees or detects very subtle aspects about the glands and the areas around them-- I don't know. Perhaps there's some very slight color or minuscule size difference in the bad gland compared to the healthy, normal ones-- I don't know.

Before saying, over the phone, goodbye to her, I said I'd just wait and watch and not have surgery (yet).

@matt2024

Matt, last week, when I spoke by phone with the surgeon, I brought up the 4D CT scan. She told me I've already had one (and just from my poor memory about what's been done, maybe I've had more than one 4D CT scan done for my hyperparathyroidism).

Yes, either from you mentioning this in the past or perhaps from my own readings in the past, I do understand that if one has hyPOparathyroidism it's indeed tricky to deal with that in some proper way.

Thanks so much Matt for your concerns and interest in my maybe not-so-common case of hyperparathyroidism. [Sometimes I wonder if my daily takings of vitamin K2 and vitamin D3 are doing a bit for me to keep calcium in my bones. These two are known to do that: together they keep calcium in bones and also round up wayward calcium putting it back into bones. For several years now, I take every day together and only 1 time each day (breakfast) one vit. K2 (MK-7 form) 90 mcg and 2 vit. D3 which totals 20 mcg or 800 IU in the 2 pills.]

@musicbart - sure thing! Happy to help. The other item worth considering is that my endo surgeon that performed my last two operations notes that some folks can have more than 4 glands and they can be located in nearby tissue so that maybe worth checking. I can tell you that I have had surgeons at the Norman Center and Cleveland Clinic and they all agree that taking a wait and see approach might not be the best strategy. I went undiagnosed until I was in my late 40s and have had over a dozen kidney stones (4mm to 10 mm) and now have degenerative changes in my spine and hips creating more fracture risk.
Take care and keep the faith!
- Matt

@musicbart
Wait and watch. I am on yearly monitoring.