hyperparathyroidism/Dr. Nicholas Coe/ Dr. James Norman

Dr. Norman: How do you sleep at night......by amnesia? Because you blow off the 1 % you failed to help with your surgery? Liar, cheat, thief, bully.

Wondered if you could fill in some details....especially what symptoms you have that are worse post surgery and also what errors you felt Dr. Norman made? I'm trying to make some decisions and your input would be helpful

I am a new poster who recently has MIRP surgery with Dr. Norman in the Spring of 2015. It was not the experience I had hoped for AT ALL. Recovery was hard and still is even months later. I am not 100%. Surgery is not some miraculous instant cure the way the parathyroid website implies. Norman's website  is a terrific resource, but his operation is lucrative and a PR machine, and the care I received I feel was sub par.

My surgery was not straightforward, and I had some concerns post-op. I felt dangerously dismissed to the point that I couldn't get answers from Dr. Norman about the surgery and what happened to my body during and after the procedure. I felt they clearly wanted me in, cut, and out. No followup. No questions appreciated. Little to no concern if complications arose. If anything, I felt like information was hidden from me to maintain his optics and reputation. They didn't want to know about concerns, and didnt want to be held responsible. It's very much an attitude of cut-to-cure and let others clean up the mess once you get home.

The other thing future patients need to know, is that Dr. Norman's bedside manner is horrendous. Call it quirky. Call it ego. But practically every other sentence is laced with offensive profanity (S-words, F-words, etc). He calls patients and doctors, idiots, and other derogatory names. When you call to ask questions, he will yell and cuss at you. Very intimidating and disrespectful.

Cosmetically, the surgery was great. Scar is tiny. Procedure was short. But I would rather have had a doctor who listened to me, cared, addressed post op complications, and didn't use intimidating language.

If you have a straightforward issue, then go to Tampa but dr. Norman is not a god, though he seems to think the sun rises and sets out of his a$$.

 

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Can you fill me in on some details about your experience. Do you feel worse since your surgery? And I wondered if you could tell me specific symptoms you had immediately post-op and in the months since. Are these the same problems you had before the surgery or new/different problems?

This is the poster from 8/17/15. I don't want to get too specific bc I don't want to reveal my identity. But I cannot imagine I am the only patient who had issues or complications post-op. No matter who does your parathyroid surgery and where, they are changing your hormones. Sometimes drastically so. And they are also fiddling with your thyroid gland during the procedure, whether you have nodules there or not, which my GP explained afterward can also cause temporary (but long) imbalances. Thyroid hormones have a very long half life, so it can take a long time for your body to readjust to both the changes in calcium and thyroid hormones.

Once you pay Normans fee and get to Tampa, you're pretty much forced to become part of the conveyor belt operation they run. Ask questions or have concerns, slow the process, and you are treated disrespectfully. They don't tell you about these possible changes and side effects until after you are already there for surgery. And then they downplay them and make them seem like no big deal. But it is a huge deal if you are the one experiencing them. It's scary. I think this operation requires much closer follow up then Normans team can give remotely.

I felt horrible after surgery. And horrible for weeks/months after surgery because my hormones were so messed up because of the procedure. Yes I felt much worst after. Norman would say is because my body was so used to the high calcium that having normal calcium made me feel sick.

It's been 3-4 months now and I am only just starting to feel a little better than I did pre-op. I felt worse for about two months. Then felt about the same pre-op for a month. Only now am I feeling a little better, but I still have good days and bad days. I think the hormone shifts actually gave me worse anxiety which I now have had to battle with.

There are people who tout the surgery as a miracle cure. Maybe it is for their symptoms. But not for me. It's been a long road. I just wish there was more info out there about recovery times and changes and the side effects of surgery, so people have realistic expectations. I am hopeful that I will feel better soon, but wish I had been treated better.

PP again. The symptoms that got worse and still exist: tingling on my hands, fingers and finger tips, lips, especially when I get stressed (this is new symptom), brain fog still comes and goes, anxiety actually got worse (new symptom ), still have hypertension spikes, still have trouble sleeping, still feel so-so generally, still irritable but have better days. I am still hopeful that these will resolve, but it's been 3-4 months now. What they say about bone pain going away almost immediately is true. That was one bright spot in the otherwise rough recovery.

Thanks for all the information. I hope you continue to improve and that the symptoms you are having and your hormone levels begin to settle/balance out. I was curious. How are your calcium and iPTH levels now? And did you have thyroid issues before your surgery?

Thank you! I realize I had the parathyroid issue for many years so it may take a while to normalize again. My last PTH was normal and my CA readings since surgery have been between 9.2-9.8. The 9.8 has me a little worried but what can you do. Before surgery my levels ranged from 9.8-11.2, so it's definitely a drop.

No, I did not have thyroid issues prior to surgery, but have had (hopefully) temporary ones after.

Again, I think there are potentially recovery issues no matter who does your surgery. I just wish NPC had been more understanding and up front about them instead of patronizing and dismissive. The scar is fabulous and is nearly gone. But I would have tolerated less favorable cosmetics for better post-op care.

Hello,

What would you suggest for me? I have had 2 unsuccessful surgeries. The first surgery removed 2 adenomas, and I felt better for about a week and then had even worse fatigue and brain fog. At the time, I was told the lower 2 parathyroids were fine. I returned four years later and had the left lower lobe of the thyroid removed because there was a nodule that may have been the left lower parathyroid. It turned out to be a thyroid nodule and I am feeling terrible. I was told that the right lower parathyroid wad fine, but they could not find the left lower parathyroid. What should I do? Have the entire thyroid removed? Go to a different surgeon? I know that this can be a complicated disease and for those like me it is not a simple 20 minute procedure. Do you believe that a full neck exploration would be the best course of action for me?

Patricienn

Thank you for your post. I will set up testing to see if I have familial hyperparathyroidism. I just had a second unsuccessful surgery at the Norman Parathyroid Center and I feel very frustrated. They told me that one of two remaining parathyroids was fine, but they could not find the other one. I wonder, if like you, the high calcium may be genetic.

I live in Cleveland and was recently diagnosed with hyperparathyroidism. I have an appt with an endocrine surgeon there in a few weeks. May I ask who your surgeon was?

Dear Dr. Norman. I have had all tests pertaining to hyperparathyroidism. I really don't feel the need for an expensive consultation when I'm certain I need the surgery. I work in a hospital that does not perform MIRP, but have run the gamut of tests and have concluded that I definitely need surgery. I have a double whammy, though, in that I have had a thyroid ultrasound which has shown a complex right thyroid nodule of about 1 cm. Therefore, I am assuming I can have both thyroid and parathyroid taken care of at the same time. My endocrinologist has referred me to a couple of different surgeons, but neither perform the MIRP that I prefer. Could the consult fee be waived in view of the fact that I have copies of my lab, ultrasound, 24-hour urine, etc. to prove my disease? Incidently, I've also had a DEXA scan and now have osteoporosis. Please help. Frustrated in Ohio

Dr Nicholas Coe is incredible, he performed my surgery Match 2015, I had one of largest tumors he had ever found. Incredible doctor and gentleman. Unfortunately, I just learned he passed away around Thanksgiving this year, a huge loss to patients and to Baystate medical center.

Ditto, Dr Coe did mine earlier this year, can't say enough about him..sadly I just learned he passed away around Thanksgiving time. He truly was one of best in world at this procedure and incredible person,he will be missed.

Where is dr.coe