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Just looking for anyone who has had or has heard of someone who has had multiple parathyroid surgeries that either culminated with a success story...or just another failed surgery. I'm just actually looking for some support or someone else to commiserate with.

About three years ago I posted I had a failed parathyroidectomy by a highly recommended parathyroid surgeon in the S.F. Bay Area. Last year I had my second failed parathyroidectomy by yet another highly recommended parathyroid surgeon in the S.F. Bay Area.

They just can't find the bad parathyroid. I've had many Sestamibi scans, CT scans, MRIs and even one venous sampling, but they just can't find it. The last surgeon thought it might be imbedded in the larynx vocal cord region; in which case it becomes a very sensitive procedure for even exploratory surgery or so I'm told.

I'm now trying to maintain a low oxalate diet due to kidney stones and I'll probably, and regrettably, be put on sensipar until they find the little b****r. I'm not very happy about this, more so with regards to the low oxalate diet although if you like light beer and meat this is a good diet for you.

You read all these successful and quick parathyroid surgery stories on this site, but, like every other unsolvable medical malady, if you fall too far off the means you'll be a neglected soul unless someone picks you up for a study. This doesn't exactly depress me. I love to travel and I continue to do so (although I no longer go to third world countries and I always carry hydromorphone with me which thankfully I've only used once) but it is disconcerting knowing that you're a runaway train waiting for some inevitable catastrophe to happen. 

If you have had a success after one of more parathyroid surgeries I'd love to hear about it.

Regards,
Dave E

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Hi Dave - I understand your frustration.  You can really get the run around with this parathyroid stuff since the experts seldom agree.  You are fortunate to live in CA where there are so many excellent surgeons.  Did either of your surgeons use the radio probe?  Seems like that should help but nothing is infallible.

I suggest that you contact Dr Babak Larian in LA.  He is an excellent surgeon with lots of parathyroid experience as well as other very complicated neck surgeries.  He is very good about calling patients and answering questions.  He might have some new ideas for you.  At any rate, you have nothing to lose by talking with him.  He did my surgery three years ago and he has called me many times, even this long after my surgery.

I know there is a solution for you somewhere.  I hope you find it soon.    mass

 

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Thank you Mass. I'll contact Dr. Larian.

I have not had a radio probe, but my assumption regarding this procedure is that the parathyroid glands have to be in and or around where you would normally find them. I seem to have one very displaced gland.

Regards,
Dave E
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I know those sneaky glands can be hard to find.  I read once of someone who had one that was eventually found in the aortic arch.  I don't know how well hidden it would have to be to keep the probe from detecting the radiation.

I think you will enjoy talking with Dr Larian.  He is very helpful even if you don't go to him for surgery.  Good luck     mass

 

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Wow, sorry to hear your story. I am about to undergo the MIRP for the 1st time and Im asking the same questions as to how do they know that they got the right one, after looking at the scans . Anyway I have been researching my options and have to travel accross country to Atlanta unless I find one I can afford closer. Its been a struggle just getting the diagnoses. I assume your calcium levels continue to rise along with your PTH . Please share your before and after surgery calcium and PTH levels if you don't mind.
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Hi I am in your same situation and recently had failed parathyroid surgery number 2 and 3 with Dr. Larian and he used the radio guided probe. Did you ever get any help?
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I had this surgery and now take calcitrol. Plus I take 600 units of regular calcium 4 times a day. The leg cramps and lethargy have gone away. I now do what I used to. I had gall stones and had that removed. Life is good again.
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