RESEARCH YOUR SURGICAL OPTIONS TO MAKE AN INFORMED DECISION
Introduction – When we finally receive our diagnosis of primary hyperparathyroidism, there is such sense of relief! We are not going crazy! It is such wonderful news to hear there is an actual root cause of the symptoms we have suffered from AND there is a surgical cure. If you are like most, you never knew that we have four parathyroid glands whose important job is to regulate calcium in our blood. Getting properly diagnosed is often difficult and sometimes further delayed due to the wait and see model of care so often prescribed. But you are past that now! Hooray! The next critical decision is to select a surgeon, as the only way to cure primary hyperparathyroid disease is to surgically remove the non-cancerous adenoma(s).
Research To Select A Surgeon – The American Association of Endocrine Surgeons (AAES) standards state that parathyroid surgery is surgeon specific, meaning that surgical techniques vary based on the surgeons’ experience and predilections. A surgeon may use any number of techniques in combination to achieve the best outcome. Given the differences in how the surgery is currently performed, we believe it is critical for us, as patients, to understand these differences and ask very direct questions in order to fully understand the type of techniques the surgeon plans to use. Only then are we able to make informed decision regarding our care. There should be no surprises.
We Are Not Medical Professionals. Consult Your Physician/Surgeon – As a reminder, we are not medical professionals. As patients, we had to wade through tons of information ourselves to select our surgeons. We will do our very best as laypeople to share our understanding of the most commonly used surgical techniques. Therefore, it is important to become educated beyond the information offered here, ask clarifying questions and have direct conversations with any surgeon(s) being considered in order to make informed decisions that are right for you or your loved one.
Who Is Classified As An Expert – The American Association of Endocrine Surgeon (AAES) defines an expert as performing at least 50 parathyroidectomies per year. Research indicates that the chance of being cured and of not having a complication after parathyroid surgery depends on the experience of the surgeon. All can agree that it is the expertise of the surgeon and their success rates that are most critical.
Minimally Invasive vs. Open Surgeries – Surgeries may be performed using minimally invasive techniques with an incision as small as 1/2″ in size. Some surgeons still perform an open bilateral surgery with an incision that is 5 – 7″ in size. Incision size may be dependent upon the approach and skill of the surgeon.
- Open bilateral exploration 5 – 7″
- Minimally invasive bilateral exploration (medial or lateral approach) 1/2 – 1 1/4″
- Minimally invasive Medial (center of neck) 3/4 – 1 1/2″
- Minimally invasive Lateral (side of neck) 1/2 – 1 1/4″
Anticipated Length of Surgery – Depending on the complexity of the surgery and in our personal experiences, the expertise of the surgeon, the operation may last as little as 20 minutes or as long as several hours.
1) Focused Surgery – Directed by pre-operative localizing studies to remove a single abnormal parathyroid gland.
Tools possibly used for focused surgery include but are not limited to : 1) Imaging Guided 2) Radioguided 3) Video Assisted 3) Intraoperative parathyroid hormone testing
2) Bilateral Neck Exploration – Also referred to as a four gland exploration, or conventional parathyroidectomy. In order to be successful, the surgeon must identify all four parathyroid glands.
Tools used for a bilateral neck exploration include but are not necessarily limited to: Pre-operative localization, radio guidance and special intraoperative techniques such as intraoperative parathyroid hormone testing (PTH testing).
3) Four gland check – Surgeon(s) have an expert understanding of the neck’s anatomy to locate and follow intricate pathways of blood vessels and nerves to locate all four glands in 20 minutes on average.
Tools used for four gland check include but may not be limited to day of surgery sestambibi scan and use of gamma probe measurement for realtime parathyroid hormone output measurements.
Here are some of the reasons why, after researching our options, we independently selected the four gland check performed at a high volume center in Tampa, Florida:
- 4000+ surgeries performed by 7 surgeons per year.
- Two of seven expert surgeons were assigned to each of our cases.
- No positive scan prior to surgery required. Diagnosis was done biochemically – through blood work.
- 1/2″ incision.
- 4 gland checks were performed in 21 minutes or less given the surgeons’ intricate understandings of the neck’s anatomy (following a “roadmap” of blood vessels and nerves) to locate the gland which enables this time efficient surgery.
- Real-time measurement of parathyroid hormone output using a gamma-probe.
- Post surgical calcium protocol.
- Receive surgeons’ cell phone numbers for emergencies and follow up questions.
Learn more about the surgery we had by watching a 13 minute surgery where all 4 glands are checked here .
FINDING THE RIGHT SURGEON
We were fortunate to be able to travel to have our surgeries at a high volume center. In the U.S. we have some very fine major medical centers/teaching institutions where parathyroidectomies are performed. UCLA Endocrine Surgery shares the following on their website. We thought this information might perhaps help in finding a surgeon.
Within the endocrine surgery community, a surgeon who performs 50 or more parathyroid operations per year is considered an expert parathyroid surgeon. These surgeons can be found through the American Association of Endocrine Surgeons (AAES). In order to become an AAES member, a fully-trained surgeon must first become a fellow of the American College of Surgeons, then submit a case log of thyroid, parathyroid, and adrenal operations (thereby demonstrating high volume and dedication to the field of endocrine surgery) to a council, and then commit to attending regular scientific conferences in order to keep current with the latest research and techniques in endocrine surgery.
For several years, we at UCLA have fielded phone calls and emails from across the country and throughout the globe from patients looking for expert endocrine surgeons. Our practice has been to refer the great majority of these patients to our trusted colleagues within the AAES and its sister organization the International Association of Endocrine Surgeons (IAES). Finally, the number of patient requests became so great that we collaborated with the AAES to create the AAES Surgeon Finder, a web page that allows you to type in your zip code and find AAES members close to your home.
If you are seeking an expert parathyroid surgeon, the best place to start is with the AAES Surgeon Finder.
American Association of Endocrine Surgeons: http://endocrinediseases.org/parathyroid/surgery_overview.shtml
Norman Parathyroid Center – https://www.parathyroid.com/mini-surgery.htm
As surgical methods vary greatly depending upon the experience and/or predilection of the surgeon, it is imperative, to do your own research and ask him or her lots of questions. We developed the questions below to help you start the process of developing your own list of questions for your surgeon.
HERE’S A LIST OF BASIC QUESTIONS YOU MAY USE TO HELP YOU GET STARTED IN DEVELOPING A LIST OF YOUR OWN….
- Does the surgeon specialize in parathryoidectomies?
- How many years has the surgeon been performing parathyroidectomies?
- How many does the surgeon perform daily/weekly/monthly?
- How many parathyroidectomies has the surgeon performed to date?
- Does the surgeon do a pre-operative sestamibi scan? What happens if the scan is negative? Will the surgeon still do the surgery?
Surgical Methods Matter!
- What is the typical length for the surgery? The time required can vary greatly from surgeon to surgeon. Are we talking minutes or hours?
- What type of anesthesia is required for the surgical procedure?
- What method does the surgeon use to locate the tumor(s)?
- Does the surgeon perform minimally invasive parathyroid surgery (MIP) ?
- Does the surgeon perform minimally invasive radio guided surgery (MIRP) ?
- Is the surgery done on an out-patient basis or is an overnight stay required ?
- There is always a possibility that there is more than one tumor. Does the surgeon check all 4 parathyroid glands during the surgery?
- Will PTH levels be monitored during surgery to help ensure all adenomas have been found? How long does each of the measurements take?
- What other methods, if any do they use to help ensure success?
- What is the surgeon’s success rate?
- What complications may possibly arise?
- Will the surgeon be available for follow-up questions/appointments?
- What will their role be if complications develop following surgery?
- What is your surgeons recommendations for Calcium and Vitamin D supplementation post surgery?