hyperparathyroidism/Dr. Nicholas Coe/ Dr. James Norman

I have primary hyperparathyroidism and am considering surgery. Has anyone had this done by Dr. Nicholas Coe of Baystate Medical Center in Springfield Ma? Does anyone have feedback on whether to get Minimally invasive surgery for this? What about Dr. Norman in Tampa?
thanks, leslie

My husband is having surgery with Dr. Coe for the same thing this month. He has a fantastic reputation (we know others who used him). We considered going to Florida as well but I think he is in good hands with Dr. Coe.

Dr. Coe has an excellent reputation.....However, everyone makes mistakes. Dr. Coe removed my wife's Thyroid Gland in November 2005. After surgery and prior to discharge from the hospital Dr. Coe stated that he had successfully removed the Thyroid, and the parathyroids and larynx appeared to be unaffected. Two days after discharge from the hospital my wife returned to the hospital by ambulance with a severe case of tetany. According to the ER doctors Tetany is a direct result of hypocalcaemia. Upon communication with Dr. Coe he reiterated his statement that the parathyroid glands were sensitive glands and would come back to normal function. As of the writing of this letter they are not functioning. My wife takes oral calcium four to five times per day to keep her calcium level in the low end of the normal range.

In September of 2006 my wife returned to the Hospital again with severe muscle pain and I was at my wits end. I wrote a blanket letter to all her Doctors to try and get someone to help us resolve the health issues we were dealing with which are a direct result of Dr. Coe's surgery. The doctors conferred and continued to try and come up with new ideas to help my wife. Dr. Coe was also involved in these conversations. Some of these suggestions have been helpful but most have not. The bottom line is we are stuck with a medical condition for the rest of my wife's life that is a direct result of Dr. Coe's Surgery.

Since Dr. Coe told my wife and I, and our endocrynologist, that he left all four parathyroid glands intact and that normal function should return we have worked for more than two years to manage this. Recently my wife was approved for SS benefits because she can not work due to the muscle pain associated with hypocalcaemia. We met Dr. Norman at the 2007 hypoparathyroid conference in Washington, DC. He spoke about research that shows that 80% of hypoparathyroidism cases in the United States today are a result of Surgeon errors. Recently, I reviewed my wife's medical records and they are not consistant with what we were told by Dr. Coe. Dr. Coe's compassion for the health situation he created compelled him to characterize my plea for help as "pathetic". I have heard where doctors' with brilliant minds and mounting experience get "God like" complexes and believe they know it all. In this case, Dr. Coe continues to believe that the parathyroid function will return. This opinion is contrary to his colleagues' beliefs and he rejects the fact that my wife still can not function normally even though the mounting medical evidence is to the contrary. Dr. Coe's opinion of himself has begun to affect his ability to deal effectively with the patients he works on.

"Caution" is the word of the day if you choose to use Dr. Coe for your surgery.

I would like to add. Since you are seeking a parathyroidectomy (correct?) please make sure that you are aware of what signs to watch for when you are released from the hospital. Also, make sure you have someone to act as your advocate. We were concerned by how few medical professionals had knowledge of the symptoms/signs of low calcium. Don't take no for an answer. Whether you choose Dr. Coe or another doctor, MAKE THE DOCTOR discuss everything about how hypocalcaemia can affect your body.

I had surgery performed by Dr. Norman. I am sure that he is a very good doctor, but I did not have good results & I feel that was due to a lack of him studying my records. I was unaware that surgery was useless in cases of familial hyperparathyroidism. I even sent my fathers records showing his elevated parathyroid levels. Apparently Dr. Norman overlooked that because he assured me that I was a perfect candidate for surgery. Right before surgery, he even said that he was 99.9% sure that he saw the adenoma & I would wake up in 30 minutes feeling completely cured. Instead, I was in surgery for over 2 hours because he had to biopsy all 4 glands and found nothing. So...nearly $5000 later, I still have the same problem. When I tried to communicate my concerns via email after the surgery (which he welcomes every patient to do), he got very hateful & basically blew me off. I am sure that he is very good at what he does, but he is also a bit too cocky. They run people back to surgery 2 at a time as if we are a herd of cattle.

I could have saved myself a scar & a lot of money.

Just my opinion.

Jewelz wrote:

I had surgery performed by Dr. Norman. I am sure that he is a very good doctor, but I did not have good results & I feel that was due to a lack of him studying my records. I was unaware that surgery was useless in cases of familial hyperparathyroidism. I even sent my fathers records showing his elevated parathyroid levels. Apparently Dr. Norman overlooked that because he assured me that I was a perfect candidate for surgery. Right before surgery, he even said that he was 99.9% sure that he saw the adenoma & I would wake up in 30 minutes feeling completely cured. Instead, I was in surgery for over 2 hours because he had to biopsy all 4 glands and found nothing. So...nearly $5000 later, I still have the same problem. When I tried to communicate my concerns via email after the surgery (which he welcomes every patient to do), he got very hateful & basically blew me off. I am sure that he is very good at what he does, but he is also a bit too cocky. They run people back to surgery 2 at a time as if we are a herd of cattle. I could have saved myself a scar & a lot of money Just my opinion.

Jewelz: Just concerned to how you are doing, I had surgery by Dr Norman in March, 2008. txgranny

I had failed surgery by Dr Norman, too, in March of this year. He found one adenoma, took it out, said I was cured.

In May, my serum calcium was 10.8 and my PTH (which had been on the low side) was up to around 50. So they were wait-and-see.

In July, my serum calcium dropped to 10.3, PTH up to 77. Dr Norman's office said I am completely cured based on these numbers so that none of my symptoms were related to the PTH disease to begin with.

Symptoms are still getting worse, and my calcium is still see-sawing. The one post-op conversation I had with Dr Norman - he accused me of lying about my test results - even though they'd been faxed to his office, swore at me like you wouldn't believe, and told me he couldn't be bothered to waste his time on me.

They did biopsy all four glands, but I'm thinking that there has to be either an extra gland or ectopic tissue somewhere in there, because I'm getting worse by the day. Haven't taken calcium supplements, so that isn't it - and I don't believe anything else cause this particular constellation of blood chemistry.

Most people have good luck with him, but do be aware that he offers no aftercare whatsoever, so if you have a problem or you're not cured - you're on your own.

Just wanted to report back that my husband's surgery with Dr. Coe in Feb 2008 was successful. Dr. Coe was excellent and the scar looks fantastic and is almost invisible already.

Leida wrote:

I had failed surgery by Dr Norman, too, in March of this year. He found one adenoma, took it out, said I was cured. In May, my serum calcium was 10.8 and my PTH (which had been on the low side) was up to around 50. So they were wait-and-see. In July, my serum calcium dropped to 10.3, PTH up to 77. Dr Norman's office said I am completely cured based on these numbers so that none of my symptoms were related to the PTH disease to begin with. Symptoms are still getting worse, and my calcium is still see-sawing. The one post-op conversation I had with Dr Norman - he accused me of lying about my test results - even though they'd been faxed to his office, swore at me like you wouldn't believe, and told me he couldn't be bothered to waste his time on me. They did biopsy all four glands, but I'm thinking that there has to be either an extra gland or ectopic tissue somewhere in there, because I'm getting worse by the day. Haven't taken calcium supplements, so that isn't it - and I don't believe anything else cause this particular constellation of blood chemistry. Most people have good luck with him, but do be aware that he offers no aftercare whatsoever, so if you have a problem or you're not cured - you're on your own.

Leida, you didn't mention where you live, but if you live on the West Coast, there are surgeons who are the opposite of Dr. Norman when it comes to aftercare. You can get in touch with Dr. Chen in Woodland (in Northern California). He is very experienced with parathyroid surgery and the possible side-affects, and he won't blow you off.

I don't live in America (which I'm happy about most of the time). But I can't afford to go back there, either, and parathyroid surgery in my country is near non-existent. Nobody would do it before because even with fusion scanning nothing turned up (nothing turned up on the scanner in Tampa either).

And nobody wants to go in and do a blind re-op. They wouldn't even do a blind first op here.

So....just hoping that the recent numbers coming down is a good sign, but I do know they fluctuate, so it may just be that. I guess we'll see.

I'd like to comment on what was previously said. I had one parathyroid removed, and Dr. Norman did the surgery. He was so nice on the phone prior to the surgery, and right before surgery he said how great I would feel. Well, that didn't happen, and trying to get help over the phone was just not there. Dr. Norman used profanity and basically said I'm cured, and hung up on me. I would not recommend going to them at all.
It's been about 4 months now and I'm still not feeling myself. My blood level calcium looks fine, I'm not sure what to do next. If anyone has any suggestions, please post and thank you.