from the Experts at the Norman Parathyroid Center.
Interesting stories of hyperparathyroidism we see every day.
The last four years of my life have been miserable because of mistakes I made when choosing my parathyroid surgeon. I have written this blog and asked the Blog Editor David Moon to post it for me, changing my name to "Susan". I successfully sued my first surgeon-not just for his treatment of me in the operating room, but for his marketing ploys that greatly over-state his expertise and the size of his practice. Here is my story. I share it with you so you can avoid making the same mistakes I made. Be smart! You are your own best advocate! (blog updated 1 month after successful 3rd operation)
In May, 2015, I will be coming to the Norman Parathyroid Center for a third parathyroid surgery.
Yes, a third parathyroid operation!
Both my first and second parathyroidectomies were performed in New York by two different surgeons located at different hospitals hundreds of miles apart, both of whom presented as if they were perfectly qualified to perform the surgeries. As it turned out, the first surgeon was just a pretender. He claimed to be the "Chief Surgeon" and "Medical Director" of a "Parathyroid Center" that uses advanced technologies and has the latest equipment. He has a very nice website that shows his expertise. It was merely an advertising ploy. He has no special training in parathyroid surgery and has never published a single scientific article on parathyroid surgery or hyperparathyroidism. There is no "parathyroid center". He is a general Ear, Nose, Throat (ENT) surgeon and is assisted in the operating room by a physician's assistant; there are no other surgeons around to help. During my parathyroidectomy, he used neither of the advanced technologies he claimed to use (ioPTH and MIRP). As I was coming out of anesthesia, he showed me a photo of the gland he removed and stated that it was my adenoma. He told me that the surgery was a success. In truth, he removed a normal gland and then failed to tell me or my doctors the truth: that he couldn't find the tumor. The parathyroid adenoma that appeared on my Sestamibi before the operation remained in my neck-he didn't remove it. He never told us he could not find the tumor. He left it up to me and my doctors to figure out a few months later when I never felt better and my blood calcium and PTH were as high or higher than before the operation. You cannot believe my amazement when my next sestamibi scan showed the exact same tumor was still in my neck!
The second surgeon was a legitimate, fellowship-trained Endocrine surgeon. I have little doubt that she would have cured me if I saw her first. She was very nice and had plenty of experience with parathyroidectomies and thought she could remove the adenoma the first surgeon obviously missed. As it turned out, she had insufficient experience in parathyroid re-operations. I didn't know enough to ask the right questions, and she had too little experience (none?) with re-operations to realize the challenge that she faced. Like the first surgeon, she figured she could see it on the scan so how hard could it be? It took her over four hours to locate the adenoma that appeared on the Sestamibi so obvious that everybody could see it. Before finding the adenoma, she took out a lymph node and chunks of scar tissue, hoping she'd excised the tumor. It is easy to see after the operation that she isn't an expert in re-operations because she had to send multiple tissue samples to the pathologist just so they could confirm (or deny many times) that a parathyroid gland was found. I've since learned that multiple "frozen section" tests can be a sign that the surgeons aren't experienced in this type of surgery. After pathology confirmed that she finally got the adenoma, she said that she had to make a very hard decision. My intra-operative parathyroid hormone (ioPTH) levels dropped by 50% but it really ought to have dropped further to show a cure. She considered exploring the right side of my neck, but the scar tissue was extensive and she felt it wouldn't be in my best interest to subject me to several more hours of general anesthesia. Speaking to me in the recovery room, she said that she was very sorry that she couldn't do better, and that I would probably need another surgery. I had to stay overnight in the hospital in a cancer ward which was absolutely miserable.
I prayed very hard that the second miserable surgery would be my last. After all that I had been through, I did not think that I had the strength of mind to undergo a third parathyroidectomy. But, my calcium and PTH levels never went down. I had to face reality. I had to plan for a third surgery. There was no doubt that I would finally choose Dr. Norman and his team of surgeons who do this kind of stuff every day.
After I applied to be one of Norman Parathyroid Center's re-op patients, my chart was prepared and organized and then given to Dr. Norman for his review. Once reading through my chart he emailed me: "I have reviewed your chart and will call you later today, but the big question I have for you is: why did a smart person like you make such bad choices about your surgeons?" Being on the receiving end of that kind of question is hard, let me tell you. I had read Parathyroid.com from top to bottom before my first operation. The amount of information on this website is incredible, and it clearly tells patients to choose parathyroid surgeons who do a high volume of parathyroid surgeries, who are parathyroid experts who know that the glands are not always where we think they should be. Be wary of their claims of high cure rates and the number of parathyroid operations they say they do. Know that ioPTH is just a tool and it is a flawed surgical modality if the surgeons use it as their "trump card" to tell how to do the operation and which glands to remove. I tried to follow those guidelines! Before I selected either of my surgeons, I downloaded a list of questions from the American Association of Endocrine Surgeons. I met with and spoke on the phone with other parathyroid surgeons I considered. I didn't think that I was making bad choices. The first guy was a complete fraud and I knew it when I showed up to the tiny hospital and was surrounded by people with diseases that had nothing to do with mine. There was no "Center of Excellence". Heck, there was no "Center". But I felt so bad and I wanted to get better. My intellect told me to get up and go somewhere else right then, but my emotions made me stay-I wanted to feel better and surely this guy can do it-even I could see the tumor on the scan! How hard can this be? I have a positive scan! Ditto for the second operation: my scan was positive. I could see the tumor on my scan myself. How friggin hard can this be?
Eventually, I'd come to Tampa. So how did this happen? Was I a victim? Was I just a gullible fool who put too much trust in the the two surgeons I chose? What did I learn? If I had it to do over again, what would I do differently?
(1) What No-One Wants to Tell You: A Good Number of Parathyroid Surgeons Are Exaggerating Their Expertise.
I always assumed that because surgeons take a Hippocratic Oath to uphold ethical standards and to "Do No Harm," then surgeons would be among the last people on Earth to lie to patients. I assumed that because many states have laws that make it illegal for surgeons to claim expertise they do not possess, surgeons' websites and other marketing materials would be truthful. I learned the hard way that some parathyroid surgeons exaggerate their skills. They lie about the technologies they use, exaggerate their cure rates, and lie about the number of parathyroidectomies they perform each week or month. Because they don't get caught, they continue to lie to patients and their families. Even when they get caught, a wall of silence surrounds them. Most people don't know that when a medical malpractice cases settles out of court (like mine did), the lawsuit never appears in doctor's disciplinary record or any other database. Thus we can't know how many times a surgeon has been sued. Other doctors and surgeons busy with their own patients don't want to "call out" a professional colleague-it doesn't do them any good to do so. Last, but not least, some surgeons calculate that a number of "casualties" are simply expected as part of doing business. Someone else, like the experts in Tampa will clean up the mess they made-that's what they do. The costs will be borne by the health insurance companies. If a lawsuit is filed, the costs are absorbed by the medical malpractice insurance companies, not the surgeons. This results in no accountability at all - along with a very high incentive to continue to lure patients to a flawed or fraudulent practice. We patients have no visibility into the deception that occurs behind the scenes. And sick people suffering from hyperparathyroidism are the most vulnerable "suckers" of all because many of us grow quite desperate for relief from our symptoms. The way to spot a fraud online is difficult because no one is policing the Internet. No one pays a fine for describing medical technologies they don't actually use. The surgeons who lie online are also very good lying on the phone. They sound so kind and sympathetic. There are two obvious clues to look for, however. One is membership in the American Association of Endocrine Surgeons. The other is highly visible data collection along with a publishing record. The "real" experts have both. Dr. Fraud had neither.
As a secondary thought on this topic-ever wonder why so many endocrinologists don't want to send their patients for surgery and will "watch" and "monitor" your calcium levels until it gets worse? It is because they are in on the secret too. They know their surgeon isn't as good as he/she claims. They feel terrible when they recommend a surgeon and then the patient isn't cured, or worse, isn't cured and can't talk. The endocrinologists are slow to send people for surgery because they know bad things can happen and their local guy isn't as good as his website says he is.
(2) Your Health Care Insurance Provider is Not a Good Judge of "Comparable Service"
Just because a surgeon is in-network, that does not mean that he or she is qualified to perform your surgery. When I found out that I needed a second parathyroidectomy, I could not find any re-op specialists in my health care network. I petitioned my health care insurance provider to allow me to have the re-op with out-of-network re-op experts. My Primary Health Care provider even wrote a letter on my behalf. The HMO came back with a list of six parathyroid surgeons who could provide "comparable service." Given the size of the premiums our family paid each month and what I'd have to pay out-of-pocket for an out-of-network re-op, I trusted my insurance company. I should not have. The list is generated by by a database and gathered names of surgeons who are board certified in general surgery or ENT surgery. THAT'S IT! They assume all general surgeons and all ENT surgeons learned to do parathyroid surgery in their residency training and thus all of these surgeons are associated with CPT Code 60502 Parathyroid Exploration. These lists do not even use billing records to see which surgeons bill the insurance company for lots of this code! Can you believe that?! These are not lists of experts, and they have nothing to do with competent or experience. By the way, while Dr. Norman was not in my health care network, the dangerous Dr. Fraud was and still is. My advice: do not let your health care insurance provider be your guide when you are trying to decide where to go for surgery. This leads to my third point.
(3) When It Comes to Your Choice of Parathyroid Surgeon, Let Money Be Your Last Concern
I regret to say that concerns about money played a big role in my flawed decisions. I am not a rich person. I have a mortgage, student loans, car payments and bills. I thought about Norman Parathyroid Surgery for my first surgery. But when I looked at what I would pay out of pocket to have my surgery with one of the experts in Tampa, I thought it would be hard to justify the expense (the consultation fee, the travel, hotel and out-of-network payments) - considering that other "equally qualified" parathyroid surgeons appeared to be available. I didn't want to tell my family about my financial hardship or ask my family for help. The problem, I discovered the hard way, is that no one who compares to Dr. Norman or the other surgeons at the Norman Parathyroid Center. No one is "equally qualified." It isn't possible-they are 23,000 cases ahead of everybody else and they have learned many things and already made all the mistakes that surgeons make. Second, basing a decision about parathyroid surgery on short-term costs can lead to long-term, irreparable consequences. Had I swallowed my pride or thought a little bit more about how to make surgery at NPC affordable, I would have gone to Tampa the first time. And definitely should have gone the second time. I would not find myself still sick and in the need of a third surgery. I think that anyone of modest means who is wondering if surgery at NPC is worth it should consider what could happen if the first - or second - surgery with another surgeon is incomplete or goes wrong. The amount of lost productivity, amount of sadness and regret, the amount of good health lost - it is an incalculable loss. Don't make the mistake I made. Find the funds. Ask for help. Crowdsource if necessary. One more point: now that I'm "in the system" in Tampa, I learned that they often decrease or eliminate the consultation fee for people who can't afford it. If you are there and see a big plate of cookies or some other goodies in the morning, then you can know that they "traded" the consultation fee for some grandmother in the other room for a batch of her favorite chocolate-chip cookies. Don't make these decisions based upon short-term money.
(4) Last, Don't Trust The Critics
Jealousy and pride are very funny things. Dr Norman and his group are very busy because doctors and endocrinologists from all over the country send their patients to Tampa. In fact, almost 90% of their patients are referred by a doctor, often saying "you can have this operation here by one of our surgeons, but if you want the best you will need to go to Tampa-they only do this kind of surgery." Despite their expertise, there is some trash talk about Dr. Norman's group too. Negative talk about Dr Norman's practice (mostly about the money they charge for a consult) influenced my decisions about who to have my surgeries with. I might not be facing a third surgery if I had not heard this trash talk. But I couldn't avoid it. For example, an Endocrinologist at my local hospital told me that the Norman Parathyroid Center was a "factory" and that Dr. Norman was a "self-promoter." She thought I ought to have my surgery with her hospital's ENT surgeons, even though none of the surgeons did a high volume of parathyroidectomies. She based her remarks on prejudice and ignorance. She'd never read a single one of Dr. Norman's journal articles. She had never heard him (or his partners) talk at one of the many large medical meetings that they speak at regularly. I also found criticism online in one Facebook group: anyone who visits the closed Facebook pages for parathyroid sufferers will bump up against the Dr. Norman Critics. People post about how they don't like Dr. Norman's tone of voice in his communications. They don't like the way he criticizes other parathyroid surgeons for botching surgeries, or how he advocates for MIRP over ioPTH. I subsequently learned that a fraction of these critics were actually patients of the surgeons in Tampa. Consequently, I went elsewhere and I paid the price. Online (Facebook) parathyroid people genuinely seem to want to help one another, but they are assisting with high stakes decisions in a low stakes environment. These folks played a direct role in me making bad decisions and they played a direct role in the fact that I am not cured today. It is easy for someone to lob a piece of criticism out there. It is easy to come in and recommend another "expert" you believe is comparable to the best surgeons in the world who you presume gets as good results. It is easy to extrapolate from your limited experience and apply it broadly to anyone, regardless of differences in medical history or circumstance. (Such as "ioPTH worked for me. It will work for you!"). But let's face it, the surgeons who do 3000 a year are more experienced and better than the surgeons who do even 150 a year.
My flawed decision making, in other words, took place in a much larger context of flawed decision-making where people -even people we are taught to trust - don't tell the whole truth and where there seem to be few consequences for directing patients to the wrong surgeons. CLEARLY there are lots of very good parathyroid surgeons out there, and clearly, everybody with a parathyroid tumor doesn't need to travel to Tampa for their surgery. For me, however, I wish I had done things differently. But once I knew there was a tumor in my neck that was making me sick, I wanted it out as soon as possible. When I was told that my scan was positive, I let my guard down and believed the hype that any joe-bloe surgeon can do this-thus clearly the guy with a fancy website can do it. I was so wrong. My calcium levels where above 11.0 mg/dl in 2011, and I've been miserable for years. It is now 2015 and I am paying the price for not picking my surgeon more carefully the first AND second time.
I hope that by sharing my "lessens learned", other people will make better decisions when it comes to their parathyroid surgeries. Even though the surgeons at the Norman Parathyroid Center do several re-ops every day (they average 9 re-operations per week, probably more than any other surgeons do first-time operations), I may not get cured. Re-ops are very difficult surgeries. Due to the extensive scar tissue, not every re-op patient gets a happy ending even in Tampa. I hope I get mine. I will let you know!
When I landed at the Tampa Airport a month ago today, I was very worried about what the next few days would bring. Would Dr. Norman be able to locate the remaining adenoma? Would he be able to get through the scar tissue from the previous two surgeries? Would I leave Tampa minus the last pesky adenoma thus cured of the disease? Or would I have to live with the debilitating symptoms of hyperparathyroidism for years to come? I was so nervous. Navigating the airport terminals, I felt like I was walking on scarecrow legs.
Checking into the Marriott, my worries began to lessen. Since so many NPC patients stay at the Marriott, they greeted me like an old friend. "You have nothing to worry about!" the desk clerk told me. Then I met two patients checking out of the hotel who'd just had surgery at NPC. Both looked healthy and well, and told me that everything went really smooth. "You'll be just fine!" they said.
The next day, as I arrived at the Norman Parathyroid Center, my anxiety level was about half what it was the previous day. Then, when I met Dr. Norman, I was finally able to fully relax. He explained to me and my sister (who accompanied me) what had happened in the previous two surgeries. He showed me the results of the Sestimibi. Then he did an ultrasound and located the adenoma. Of course, he joked around the whole time he did the ultrasound, which made it hard because I kept laughing. With a game plan in hand, he told me he'd see me after the surgery. The Anesthesiologist sent me into sleep mode. The next thing I knew, I was awake, with my nurse by my side. "What happened?" I asked.
"He got it. Just 17 minutes." At that point, the most wonderful feeling of relief washed over me. I could finally, completely relax. All of the fear and anxiety that had been stored in my body for all that time as I went from one surgeon to the next just left. It felt like a miracle. Thank God I had the sense to finally see Dr. Norman.
I went back to my hotel room and slept. My throat was sore from the anesthetisa tube. (I had to have general anesthesia.) Then my sister and I had a late night dinner and celebratory glass of wine. The next day, my sister had to catch an early flight, so I walked down to the Tampa Museum of Art and sat for a few hours on a bench at the Riverwalk. I can't recall ever feeling so calm or happy. It was because Dr. Norman gave me my "Happy Ending." I was finally free of the disease that had nearly ruined my life.
Today, I'm doing great. I have more energy and am sleeping much better. I know that it's going to take work to get into the kind of physical shape I want to be in. Hyperparathyroidism did a number on my nerves and muscles. And, of course, I have to re-strengthen my bones. But I know that the next time I walk through the Tampa Airport - or any airport - it won't be with nervous, shaky legs. It will be with the confident stride of someone who finally got it right and went to see the world's parathyroid expert. The next chapter of my life awaits. Thank you Dr. Norman!
EDITOR'S NOTE: No surgeon cures every patient they operate on. You cannot expect a 100% cure rate from your surgeon because that is not possible. The surgeons at the Norman Parathyroid Center do not cure everybody they operate on, but we get pretty close. In fact, if we had a 99.5% cure rate and a 0.5% failure rate, then we would have a failure every 2.5 weeks, because we do about 65 of these operations every week. We know when our patients are not cured, and we tell them. And we work with them and get them back so we can cure them the next time. So keep things in perspective. Chose a surgeon you trust and you like. But don't chose one because they promise to cure you. Nobody can make that promise.