Endocrine surgeons with expertise in parathyroid disease?

I am so very sorry to hear this. You deserve to be treated, with or without the funds . No one has to suffer because of lack of money. I sincerely hope that you can get some help from somewhere and not give up on yourself. I will pray for you and your recovery. Hang in there..........

I had parathyroid surgery at the Norman Parathyroid Center in Tampa FL in 2004. I believe I had the tumors a long time. Dr Norman said come to me and you will never have complications or have to have it redone. 10 years later I needed more parathyroid surgery. I went to Mayo in Rochester MN this time around. I do not believe I was cured at the Norman Clinic. So far I appear to be cured after having surgery at Mayo but time will tell. I have no idea if I have had permanent damage. It is not too late to take action jmbjar.

I belong to a support group and have heard of quit a few who were not cured at Norman Parathyroid Center. Sad, the promises made .
If I had only done my research on this disease instead of listening to unknowledgeable surgeon /endo ( which I believed for 10 yrs ) I would have had surgery . But now it is impossible for me to come up with the funds as obviously I have to go out of country.

jmbjar ~ Check with Mayo they may have a program you could qualify for where they help with funding the operation.

Thank you upnorthnancy,. I was in contact with them a few yrs back and nothing available to me at that times

Hi jean843, My user name is @gailfaith and my name is Gail. I have also just been diagnosed (Dx) with Hyperparathyroidism. I was Dx with Myotonic Dystrophy type 2 at Mayo in 2013. My GP "set me up" with a local endocrinologist but my FIRST appt is not until July 29!. The trip to Mayo was very tiring and I was in better shape with the Dystophy then than I am now, and though I would love to go back to Mayo, I am not sure physically I could make the trip. And last time I had my service dog with me. (And that is his picture!) But alas, his days are over. I don't really want to wait until the end of July so I am trying to get an appt else where that might be closer, but with all I've read, GOOD pt surgeons are as rare as the "proverbial "hen's teeth". I live near Philly. Anyone know of a good pt surgeon in this area? Not sure I will need surgery, but just in case I do.

What I understand is if you have pt disease the ONLY solution is surgery to remove the tumor from the pt gland.

It depends on - if one has Primary Hyperparathyroidism is the one where the only cure is pt surgery. But there is also 2ndary hyperparathyroidism - depending on the cause of 2ndary , the cause would be treated. For only one example if one has 2ndary hyperparathyroidism due to vit d deficiency - the treatment would be to treat with vit d by prescription.

Hi Gail.
I gather you do not know yet if you have "Primary" Hyperparathyroidism

If you would like to join an awesome/educated/knowledgeable group in Parathyroid disease where you will get awesome support as well as education in this disease + recommended PT surgeons "Parathyroid Disease Support & Awareness Closed Group". A great group, not the typical FB group
In the meantime, I looked on the group to see if there were any highly experienced pt surgeons in Philadelphia. If I understand Philly correctly ? I am a Canadian , so not sure. Here are the highly recommended pt surgeons in Philadelphia

Dr Ned Carp ( Lankenau Medical Center ) , Dr Rachel Kelz and Dr Douglas Fraker both at University of Pennsylvania

Hi jmbjar, I think Colleen told me your name is Jan. Is that correct? Are you in the medical field? I am a toxicologist in pharmaceutical research...or was, now retired.

Sorry for the delay in getting back to you as there have been problems with the Connect site. Because I am not very computer literate, I have not only been asking her a lot of questions on "how do I?", but in the process I am finding for them some of the bugs in their program.

I really appreciate your response and the names of some excellent close by, PT surgeons. And yes, Philly does stand for Philadelphia! This site is educating me so I am really liking it. I didn't realize there are primary and (I guess) secondary types. At this point I have no idea as I mentioned I don't have an appt with an endocrinologist until July 29! But the nurse/tech who called me and told me about the Dx, I think she also said no surgery. With everyone saying surgery is a definite, I had no idea about the other type. I have forgotten most of my college biology! I had asked her if the doctor they are sending me to did surgery and he doesn't as I expected. So with all the warnings about finding a GOOD one, I have started to get an appt at Hopkins which in only a 2 hour drive away. Mayo is too complex (3 flights) for me now to try to get to.

When I know a little bit more about PT and had some questions, I will probably join the Closed Group that you mentioned. Thanks for the tip!

Again, thanks for all the info. Gail (@gailfaith)