Coming Full Circle – Learning from Experts

Coming Full Circle is a series of 4 Blog Posts describing our experiences visiting the Norman Parathyroid Center as patient advocates.

Blog Post #1 – Coming Full Circle – A Visit To NPC’s Clinic at Wesley Chapel

Blog Post #2 – Coming Full Circle – Dinner with the Surgeons

Blog Post #3 – Coming Full Circle – Meet-ups Expand

This is our fourth post of the series…

The alarm goes off and through squinted eyes we can make out that it is 5:00 am. in Tampa, Florida, though for us, visiting from the West Coast, our bodies are screaming 2:00 am. – ugh!  Despite it being a god-awful hour, it is the anticipation of the day ahead that gets us up and moving quickly. We brew in-room coffee… not our first choice but hey it’s caffeine, right? We grab energy bars that we had stashed in our luggage for “emergencies” and we head outside to wait at the hotel curb. At the appointed time a car pulls up…. it’s no other than Jim Norman, the founder of the Norman Parathyroid Center, there to take us to Tampa General to learn more about parathyroid disease and the surgical cure, first-hand from the experts – the surgeons at NPC and their patients.  Yes, it true that patients often become “experts” as well, after going through the process of getting their diagnosis and selecting a surgeon!

For two days we spend time at the surgical center, learning more about parathyroid disease, its various clinical presentations and their surgical techniques. Here’s just a glimpse of what we learned…

News of Expansion – The surgical group performs on average 12 to 14 parathyroidectomies per day. There are currently three operating rooms used to perform this surgical procedure. They shared with us some rather exciting news… NPC will soon be expanding into a new, larger space within the hospital that will include four operating rooms for parathyroid surgeries AND their new Thyroid Cancer Center. Watch for more news about NPC’s expansion on their FB page.

Meeting Patients – We had the opportunity to shadow the surgeons while they did their pre surgery consults. We were enlightened by being included in these discussions and were often invited by the patients to stay on to converse while they either waited for their sestamibi scans and/or surgeries. Time and time again, the patients’ stories sounded all too familiar. For the most part they all had been ignored by their GP’s and/or Endocrinologists when their calcium lab values were clearly too high to be considered ‘normal’.

Some stories seem to underscore the prevalence of the disease.  We met two women who were college friends. They both were diagnosed around the same time and so they coordinated their surgeries to occur on the same day so that they could support one another! And then there was a woman, who had the surgery herself a few years prior, now providing support to her husband. All were hopeful and anxious to get their lives back and be rid of one or more of their debilitating symptoms including, but not limited to, bone pain, brain fog, kidney stones, anxiety, heart palpitations, hair loss, and in one very rare and unusual case calciphylaxis, a syndrome of vascular calcification, thrombosis and skin necrosis.

How does an adenoma grow?- Adenomas grow out of the parathyroid gland, generally obliterating the normal gland as they enlarge. You can somtimes still see a rim of the normal parathyroid that is small and yellow with a dark red tumor growing out of it. This happens when a rogue cell multiplies. The result is an adenoma that produces excess parathyroid hormone which calls for calcium that is stored in our bones. Learn more here: http://www.parathyroid.com/parathyroid-disease.htm.

Parathyoid Non-canceorus Tumor

 Scans and Ultrasounds – Many patients have negative scans at home so they are told by their local surgeons that they have to wait for a positive scan to get surgery. NPC regularly operates on people who do not have positive scans who have tumors  The purpose of the sestamibi scans done prior to surgery at NPC help determine whether an adenoma is in an ectopic location (jaw or chest for example) which might require an alternative surgery. In most cases, the glands are right where they should be – behind the thyroid and as a result, they don’t necessarily show up on scans.

How do they find a tumor when it’s not showing up on a scan? – Once the patient is sedated and just before surgery begins, an ultra sound is performed. Because the patient is sedated the ultra sound produces better results. However NPC surgeons still do not rely on the ultrasound scan, it is simply used to inform them of what they can expect to see going in. NPC’s surgeons are trained so that they have an intricate understanding of the neck’s anatomy.

By following blood vessels, nerves and other pathways they have identified and named, they are generally able to find all four parathyroid glands in 20 minutes or less.

Note that reoperations are different and often DO require a positive scan.  Scar tissue from previous neck surgeries may obliterate the “roadmap” NPC surgeons use to find the glands.

 How is the radio-guided probe used? – There seems to be a lot of misunderstandings as well as mystery surrounding the use of the probe. Do the NPC surgeons use it to find the adenomas during surgery, like one might use a metal detector?

At NPC the probe is NOT used to “scan” or locate the adenoma(s) or the glands.

We learned that it is used only to measure parathyroid hormone output of both the adenoma and biopsies of the other (generally three) remaining parathyroid glands. The radioactive isotope used during the sestamibi scan just prior to surgery remains in the glands at the time of surgery so that the radio guided probe can detect the PTH levels. This is not the same calculation as measured in the blood – it is a radioactive count.

Once removed, the adenoma is put onto the probe and the reading immediately informs the surgeon how “active” the gland is, which correlates to the PTH output. Likewise, biopsies taken from each remaining gland are also measured on the probe.  When a tumor is creating too much parathyroid hormone, healthy ones shut down. If a gland is producing PTH then that is an indication that the plump gland also needs to be removed, as it will eventually grow into a second adenoma, thus the importance of checking all four glands. Tissues and biopsies are then sent to the pathology lab.

Prevalence of Thyroid Disease – Several patients, over the course of our two-day stay, either knew already or found out during their visit to NPC, that they had thyroid issues. While the thyroid and parathyroid glands each have very distinct functions that are unrelated, it does seem that quite a few patients with pHPT have Hashimoto’s thyroiditis. Two of the three of us have this condition. We learned that untreated Hashimoto’s can make parathyroid surgery a bit more tricky yet experienced surgeons can remove an adenoma without unnecessarily removing thyroid tissue. While nodules can be removed at the time of surgery if deemed necessary, we learned that it is quite normal to have them and they can often be left alone.

How does seeding occur? – When a “soft” adenoma is removed during a surgery it can easily break apart by an inexperienced surgeon if too much pressure is applied during removal, or the grave error is made to purposefully break it apart to aid in removal. It doesn’t take a great amount of pressure to cause this type of adenoma to burst and seed within a patient’s neck creating a situation where a patient could never be cured because each “seed” then grows into a tumor. Patients who have had this occur elsewhere come to NPC for help with management.

 Some Unique Techniques and Strategies!  

  • We arrived at Tampa General thinking that this surgery was perhaps ‘easy’ and straight forward. While it often is a quick and easy surgery for the patient, a successful surgery requires highly skilled surgeons. Each case can of course be unique and therefore each has the potential of presenting its own challenges. We discovered that each surgery is performed strategically, so every patient receives the best possible care and outcome, thus their 99% success rate.
  • NPC’s surgeons always work in teams of two, sometimes three, so patients benefit from the expertise of more than one surgeon. Though each surgeon is uniquely qualified, this strategy ensures greater success. A second surgeon always verifies the first surgeon’s findings.
  • We were told that switching sides during the course of an operation is very unique. These surgeons actually switch sides regularly depending on which glands they are looking for.  When they are looking for right upper and lower glands, they stand on the left of the patient and when looking for the left two glands, they stand on the right of the patient.
  • NPC surgeons prefer to think of the upper and lower parathyroid glands as “anterior” and “posterior” as this more accurately denotes their locations, though they still call them  upper and lower glands.
  • If the surgeons do not see a parathyroid gland within a few minutes, they informed us that they move away from that area and look for another gland. This tactic is used so that when they return to the first area after a few minutes, the parathyroid gland has changed color and gotten plumper, and often “pops into view”.
  • The surgeons at NPC do not explore – every move is calculated based on their understanding of the neck’s anatomy.
  • The surgeons perform plastic surgery to create a clean line so that the scar becomes invisible.

We are forever thankful that the NPC surgical team spent two days explaining this disease to us in much greater detail than we could have ever imagined! This entire experience has further inspired us and we will use what we have learned to continue to help others and advance the mission to raise awareness and advocate for improvement in diagnosis and standards for surgical treatment.

Be informed! Understand the procedure you are signing up for! Here is a list of questions to help you get started in developing your own list of question to ask.

Please read our Terms of Use. As always, it important to contact your own healthcare professional, doctor and/or surgeon to learn more about your own particular circumstances and what you can expect in your case. 

2 thoughts on “Coming Full Circle – Learning from Experts

  1. I have been recently diagnosed with Primary hyperparathyroidism. It took 3 years of this recent health crisis, before i received a diagnosis.I have been researching the disease and treatment. I too discovered Dr Normans center on line.According to his website my calcium levels are 11.3 which is in the malignancy range. my breathing has been compromised, I have low vitamin E and have had Chronic diarrhea for the last 3 years. I believe that I was in a parathyroid crisis when I first sought care. i was treated by the endocrine surgical department like a hypochondriac and was sent repeatedly to my local general practitioner. I have fought for almost 3 years to get a diagnosis. It was two months ago that I finally got a diagnosis. I am trying to get the Swedish National health service to pay for the operation. I am unsure if I will be able to accomplish it.

    I am running into a lot of red tape. I am quite frustrated. Two days ago i spoke with the head endocrine surgeon of my local hospital for the first time.. He wants to do an ultra sound and one other scan to decide which side of the neck he will operate on. He wants to open one side of my neck . He wants to remove the parathyroid one at a time to find the offending one. I was flabbergasted. He discussed removing the thyroid on that side if necessary if he can’t find the problem. I am not going to allow that nincompoop to touch my neck with a scalpel.

    I am quite upset. I am trying to calm down before I move forward. Swedish medical system is different than in the United States. I have to have a voucher to seek surgical services from another district. The line for the surgery for me must exceed 3 months, for me to be allowed to seek care else where. If the waiting list is over 3 months and or I need specialize care not available in Sweden I can seek care outside of the country. It is complicated because there is new laws have been implemented to allow patients more choices ,but they are so new they have not been implemented all over the country

    I am so glad to find your site. I needed to remember that I am not alone. I plan to regroup and start again on Monday to get the proper care that I need.
    Honey

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    • You are not alone! Definitely regroup and keep advocating for yourself in order to get the care that you need. What you have described sounds like exploratory surgery. Expert surgeons area able to assess all 4 glands BEFORE making the irreversible decisions to remove any. Surgeons who remove glands as they find them may very well remove 3 perfectly good glands in an effort to find the offending adenoma. We wish you all the best and so happy you are so well informed!

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