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Hi,
I have hyperparathyroidism and live in NM. I'd really like to find a surgeon that is excellent in the region (AZ, TX, NM, CO, UT). I understand the surgery is very delicate and must be performed by an experienced surgeon who is a specialist. I haven't had much luck even finding a good endocrinologist in this area. Does anyone have any suggestions. I have hyperparathyroidism adenoma.

Thank You,
SuseyQ

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Hi SuseyQ - I live in CO and had surgery one year ago. I went to Dr Babak Larian In Los Angeles and I highly recommend him. If you do a search , you will find his website. (This board doesn't allow us to post web addresses). Dr Larian is an excellent surgeon and very nice and easy to talk to. I might never have gotten to surgery If I hadn't contacted him. I suggest that you call or email his office. He will call you and answer any questions you have. I wish you well. mass
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Mass,
Thank you for the information. After searching many sites I did come up with his web page. I have just contacted him. Do you recommend him over anyone you've located more locally? How many visits did you need to do? How was your recovery?? It sounds like a pretty challenging recovery for a lot of folks. I saw a lot on the FL guy but who wants to pay $1,500 consult fee when we've already been through a lot of that. It seems a bit unreasonable. I'm hoping to have the surgery done before any major damage is done. I've been spilling Ca+ for years in urine.

Thank you again,
SuseyQ
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SuseyQ - -I actually never contacted anyone locally. My endocrinologist in Denver told me that no one would do surgery under my circumstances. When Dr Larian talked with her she agreed to surgery. I would recommend him over anybody. He's an excellent surgeon and just plain nice. My surgery was long as it also involved removal of one thyroid lobe and a very large nodule. Recovery was easy. I had two Tylenol in the recovery room and never needed more. An ice pack felt good.

I only went to CA for surgery. He said I would probably be okay to travel on the third day and I would have been but we opted to stay a little longer to visit friends and sight see. Since I was in town longer, I had an office check the day I flew home. My incision is about an inch and barely noticeable.

Since I had general anesthesia, I had a breathing tube and that did irritate my throat for a while. I drank a lot of cold liquids and tried not to talk too much. Surgery was at Cedars Sinai, an excellent hospital. The nurse called my husband's cell during surgery to let him know everything was going well. I went back to the hotel that night. We were instructed to call Dr Larian's cell any time, day or night, with any problem or question. I talked with him about ten times before I went to CA and he answered all my questions.

I believe that he is out of the office this week but you might get a response from Shaye - she is really nice too. I couldn't ask for a better surgical experience. Did you find the website where he talks about parathyroid surgery? I think there's more than one site.

Let me know how everything goes. I wish you the best. mass
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Mass,
Still struggling with all of this. I've done all the preliminary work for Dr. Larian that my doctors here would support. They won't even retest the parthyroid or CA+ levels. They say my results were flukes. I also can't convince anyone to do a CT with contrast which Dr. Larian needs. Is it possibly you could try to locate a "worthwhile" endocrinologist through in Albuquerque through your endocrinologist??? At least they were smart enough to send you to one of the best surgeons in the country. I don't even think they did the Sestambi scan right here. Albuquerque or El Paso are the only major cities fairly close by. I would also consider Tuscon if I could really get the support I need.

Thank You,
SuseyQ
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SuseyQ - I'll see what I can find out but I found Dr Larian myself - through posts from others on this and other lists. I might never have gotten to surgery with my endo. I take you have talked with Dr Larian. Sorry you are having problems. mass
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Mass,
I had already found Dr. Larian on the posts here, but wanted some feedback and needed to know if there was someone closer. I will try calling UNM today and getting an appt. I'll also try to insist that my primary doctor gets involved since the endo. is taking such a laid back approach. I don't think it's unusual to have problems in this area. It's a bit puzzling to me why nobody really wants to commit or follow through about this. It seems they don't want to admit their inadequacies. I still have to contact the hospital in LA regarding how they do their Sestambi scan. They require 2 days. The guy in FL seems to have a real ego. Granted he's an expert, but he sure puts every other doctor down. I've only gotten to talk to Sharye. I've sent them labs and such but Dr. Larian has been totally tied up in surgeries for about 2 weeks.

Thank You,
SuseyQ
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Mass,
I did find out why they do a 2 day Sestamibi rather than a 2-3 hour. It's because there is a decrease in the supply of isotope that is being used so they have opted to use a different one which lasts longer and therefore needs to be done over a two day period instead of a few hours.

SuseyQ
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Well, that explains the 2 day deal. It must take longer to fade out of the thyroid so they can't see the parathyroids for a while.

My endo doesn't know anyone in your area. Have you tried searching all the parathyoid questions on this site? It seems to me that someone once recommended a doc but maybe it was only for surgery. Not sure.

I think it will be very helpful when you actually get to talk to Dr Larian. If you're not already on his call list, ask Shaye to put you on. He will get to you. Maybe he would talk with your doctor too.

Yes, it is a very frustrating disease and for some reason, many people have a very hard time finding doctors who are helpful. I know you will find someone. mass
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Mass,
Thank you for the encouragement. I am on Dr. Larian's call list so it's just a matter of time. I know things will work out. The waiting is just hard. It's hard dealing with the doctors and trying to get your needs met, but eventually I'll get the answers and testing done right.

Thank You,
SuseyQ
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Everyone with this disease needs support. Other people don't understand and most don't even know they have parathyroid glands. Obviously, many doctors don't understand it either. Dealing with doctors just makes everything worse. If you would like to correspond privately, ask Shaye to give you my information. I'll tell her it's okay.

Don't be surprised if Dr Larian calls you at 6 or 7 PM. Sometimes he has a spare moment during the day but he usually calls me in the evening. He even called me from home at least once. Hang in there. It took me a year to get to surgery and that is much faster than many folks. mass
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Hi susey, I guess I am where you were a year ago. I have been sick for over 6 years. I have been tested from everything from MS, Lupus and so much more of course they say I have Fibromyalgia and spine issues with arthritis. I went to see an Endocrinologist here in Albuquerque. Her name is Martha Terlecki. She ran test and that Is when I learned my calcium levels were high so she ran a PTI and it was high. I researched High calcium and Web MD lead me the Norman Parathyroid Center in Florida. It has great information and I could answer yes to most of the symptoms over a year ago now I even have more symptoms like Osteopenia severe gastric issues came out of nowhere now personality changes Dr. Terlecki did not feel I had any problems with my parathyroid. I could go on but I would like to see if you will respond to me and I would like to know how you are today. I hope you have had positive results.

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Hi, I had a parathyroidectomy a little over two years ago. My calcium is elevated again, which indicates that the surgeon did not remove all bad parathyroid gland/or glands.  I'm in Charlotte, NC. While there are plenty of general surgeons in the area, I can't find one that specializes in parathyroid gland removal. It's important to have an experienced parathyroid surgeon.  Any suggestions are most welcome!

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I have been trying to find a surgeon that can do my parathyroid surgery in Albuquerque.  The scan my endo did 3 years ago could not find the tumor so the endo just put me on Vitamin D.  I am now to the point that my quality of life is BAD!  I even tried to go over the head of my endo and found a surgeon that did more then 50 of these surgeries a year but she would not trump the endo and shortly retired after.  I changed jobs, insurance changed and I work for a group of docs that I refuse to even see for my physical for fear of going in 100 different directions instead of just having the surgery!  I have considered taking out a loan and going to Orlando to the real experts but that will be $13K at least out of pocket.  SO I was wondering if anyone has found a good surgeon that knows how to do this surgery here in the Burque and if he takes BC/BS that is a plus!!!  I am starting to get desperate because I feel like hell and cannot even walk W/O pain in the heels because of this condition!  Thank you in advance!

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I'm in the same situation. I have met with a surgeon but she's reluctant to do surgery since she can't visualize an adenoma with imaging studies. I've dealt with this disease for 9 years and doctors are just pissing me off. Just because you can't see an adenoma, doesn't mean it's not there. I have severe osteoporosis from it. I'm to the point where I'm so fatigued that I sleep a lot but my sleep is interrupted. I'm 5'6" and down to 95 lbs. I have brain fog, muscle and joint pains, muscle wasting, and have had so many fractures, I'm on disability! The thing is, my surgeon performs around 300 MIRPs a year yet I feel she isn't comfortable with her ability to do exploratory surgery. So, if she can't "see" it, she won't do surgery. I used to live in FL so I could have easily gone to see Dr. Norman.  I had such hopes with my surgeon! She doesn't want to do exploratory surgery because she'll be medically liable. So, if she doesn't do surgery and I develop sever complication due to hyperparathyroidism, then I will hold her liable. Works both ways! Have you had imaging studies that show where your adenoma is? Let me know!

 

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