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Any updates from anyone about their surgeries? Some postings are a year or more old, just before or just after surgery, so I'm interested to hear how they turned out. I'm looking for a surgeon to do the mini surgery, preferably in the NYC area, but I'm willing to travel anywhere for the right surgeon. Thanks!
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Hi Pianoguy, If you are willing to go to Los Angeles, I highly recommend Dr Babak Larian. You can find his websites and contact information if you do a search. He did my surgery in January. It was easy and I had no problems. It also involved removing half the thyroid due to a large nodule but the incision was still about an inch and healed rapidly. Dr Larian was, and still is, immediately available if I need him.

At three months post surgery my PTH had gone back up to the 80's but the surgeon suggested that the glands might just be working extra hard. Whatever the reason, it is now well in the normal range. there are many excellent surgeons in the US. If you are going to come here, check them carefully and choose one you are really comfortablewith. Best wishes - mass-
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Hi: I had a second surgery to remove my bad parathyroid gland in March of this year by Dr. William

Farrar at the James Cancer Hospital here in Columbus, Ohio and everything went great. I did not

have the mini surgery and I don't know if he does it or not but you could call his office and ask them.

Their number is (614) 293-8890. Good Luck!
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Hi mass, Thanks, I've contacted Dr. Larian and talked at length with his coordinator, Shaye. She was very pleasant and helpful and said that Dr. Larian will call me soon - a bit difficult to arrange since I live temporarily in Hong Kong.



Was it Dr. Larian who said that your PTH in the 80's is in normal range? Normal range is listed as 15 - 68, so the 80's are well above normal range, it seems. Have you checked your calcium level? How are you feeling?
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mass, I just realized that I misread your post regarding your PTH level having BEEN in the 80's, but NOW within normal levels. Sorry!
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Hi pianoguy - I'm glad you talked with Dr Larian's office. They are just the nicest people and he is the best of the best. In the office they have a scrapbook of cards and letters from patients saying "thank you for saving my life " or" thank you for saving my voice when everyone else gave up on me". Obviously, word has gotten around as they have been very busy. He will find a way to call you. He called me one night from home and after surgery I had his cell # with directions to call him night or day. I didn't need to call but I have heard others who have.

I never had high calcium. Before surgery it was 9.6-9.7 and right after surgery it was the same. On the last two tests it was 9.2. I still take a lot of calcium and vitamin D but I don't mind. I have osteoporosis and I'd rather take those and exercise. They won't repeat the DEXA scan for another year.

The PTH range I have is 10-65. About a month after surgery it was 64. I was disappointed but Dr Larian reminded me that it was normal. The next time it was back to 80 something and he said it would take several tests over time to know what was going on, that it was possible that the calcium was going back into my bones really fast so parathyroids were working extra hard. Whatever the reason, on the next test it was 61 and a couple of weeks ago it was 44. Sometimes it takes a while for things to adjust.

I feel pretty good. I never had all the symptoms that lots of people have - mostly reflux and osteoporosis. I think the reflux is better but it doesn't go away as I also have esophageal spasms. I'm hoping the osteoporosis is better. I do think I just feel better overall. Recovery from surgery was easy and a couple of weeks later I was amazed at how much energy I had. I had been sitting around feeling yucky for a long time.

I wish you the best. mass
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Hi,
I am new to this site. I have been living with parathyroid disease symptoms for about 5 years and am tired of being told that we should "wait and see" or that I may need to "live with it". I noticed that someone on this site asked whether or not there was a doctor that did minimally invasive surgery anywhere in the midwest. I did not see any replies to that post. I would like to have a sestamibi test done by someone who really knows what they are doing. Here in Bismarck, they only do about one a month......not good! I did see a specialist at the U of Minnesota and she was the one that said I might need to just "live with it". I am willing to travel to resolve this problem. Actually, I have a great surgeon here who does lots of thyroid surgery, but I don't (and neither does he) want to do any type of exploratory surgery. If anyone has any suggestions, I would really appreciate it. Thanks in advance.

Pam in ND
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Hi mass, I'm very happy for you that it went so well, and that you are feeling better. Sorry you still have reflux and osteoporosis. I've read on that if osteoporosis is cause by hyperparathyroidism, then the bones will repair themselves after proper parathyroid surgery. Have you asked Dr. Larian about this? Perhaps you have this improvement to look forward to. But if your osteoporosis was caused by other factors, then I guess this won't apply. As for acid reflux, have you tried drinking aloe vera juice? It worked wonders for my young daughter's acid reflux, and I have found it very effective whenever I get heartburn.

If my home base was not in NYC, I would love to have Dr. Larian do this surgery. I'm still considering it, but I'm also considering a couple of NYC surgeons, since it will be so much more convenient. Mostly, I'm concerned that in the unlikely event that a complication develops post-op, I'll have to either stay in a hotel in LA for who knows how long, or else find someone in NY to deal with it. I haven't found anyone in NY yet who impresses me quite as much as Dr. L, but it feels a bit silly to travel across the country to do it when there are several NY surgeons who are quite experienced at it - if not as well known for it. Still pondering...

***edited by moderator*** web addresses not allowed
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Hi, yes, I've tried aloe vera juice and all kinds of other stuff plus Prevacid and Pepcid. Nothing helps reliably. I think it's more the spasms and hiatal hernia that cause the problem. I don't have the heartburn that many people have, just discomfort.

I'm hoping that the calcium is going back into my bones. They won't repeat the density scan for another year so I'm doing all I can to help it along. Meanwhile, it's easy to assume that it's doing what I want.

I understand your travel situation. I think Dr Larian would be worth the trip from anywhere but I'm more than a little prejudiced. Yes, the chance of complication is slim and if you did have some complication, I think you would be in the hospital and not the hotel. He suggested that I stay in the area for a couple of days, just in case. I know a lady who traveled there by herself and her surgery was very simple (20 min) but they kept her in the hospital overnight because she was alone. Have you discovered that he does the surgery at Cedars Sinai? That's a top hospital and it was also a very positive experience for me.

Wherever you choose to go, be sure that you are really comfortable with the surgeon and get all your questions answered. I hope you will stay in touch. mass
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I'm new to the forum. Do you know how to send a private message? I don't see how to do it, and the FAQ don't explain it, as far as I can tell. What do people do here if they have a question that pertains to something that someone else posted, but that you don't think would be of interest to anyone else but that person? Thanks.
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Hi; I'm not real sure, but try and post a

quote directly concerning the message you want to answer. Bob
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So far as I know, you can't contact people personally from this site.
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So we will all remain forever anonymous to each other? Oh well...
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Hi Pam - sorry I missed your post yesterday. Have you considered Mayo in MN? I know people have had successful surgery there.

I understand your frustration. I had mild symptoms except for the osteoporosis, normal calcium and a negative scan. My endocrinologist said that no one would do surgery under those circumstances and we would just watch it. Finally, in total frustration, I emailed a question to Dr Larian about his experience in such cases. I was shocked when he called me to talk about it. He offered to look at my scan and when he couldn't see anything definite, he suggested a CT scan that he could superimpose. He still couldn't see anything definite, just the large thyroid nodule that we knew was there. When I said,"Now what do I do?" he said, "Now you have to decide if you want to have surgery under those circumstances." I told him my endo would never go along with that and he offered to talk with her. He did, and she was all for it! They agreed that the nodule and that thyroid lobe should be removed during the surgery. So, the surgeon really didn't know what he was going to find. He found a good sized parathyroid adenoma hidden behind the thyroid nodule. It probably never would have showed on a scan. Also, the thyroid lobe he removed had two small cancers that hadn't been detected. So, that was taken care of before we knew about it! They might never have caused a problem but I'm glad they're gone.

What I wanted, and I suggest the same for you, is a surgeon who does minimally invasive surgery and can use the radio probe to locate the adenoma. They should also use the intraoperative PTH testing which helps them know if they have removed the entire problem. Nothing is fool proof but I think this is the best situation.

You said you would be willing to travel. If you would go to Los Angeles, I would suggest that you also contact Dr Larian. I never would have gotten to surgery if it hadn't been for him and besides the adenoma, the cancers would still be there. He would be willing to help you even if you weren't going there for surgery.

Ask lots of questions of any doctor you consider and be sure you are comfortable with the situation. Hope you get an answer soon.

mass
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Pianoguy - if you want to contact me, ask Shaye to give you my information. I'll tell her it's okay.
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