So you have your diagnosis and are being recommended for surgery. Hooray!
You may be thinking …
“Thank goodness the hardest part is behind me”. From our experience it is!
“I am so grateful to know that these horrible symptoms I have are a result of a disease and I am not losing my mind, “. Yep, they are. You are NOT crazy even though some medical and/or mental healthcare professionals might have made you feel that way!
“See, I wasn’t making any of this up, I have a real diagnosis and my endocrinologist is referring me for surgery”. Surgery is in fact the cure!
More often than not, primary hyperparathyroid patients have to work REALLY hard to get diagnosed. Many patients see medical professionals who are not familiar with the disease, others are bogged down by the “wait and see”model of care, and/or referrals for surgery are delayed because physicians want a scan to confirm their diagnosis (scans to confirm diagnosis are not actually necessary – please learn more about this by reviewing OUR STORIES.) On top of all this, trying to research the disease and navigate the medical system with brain fog can make the process even more difficult.
So when the diagnosis is finally made, there can be a tendency for patients to simply let their guards down, be compliant and allow someone else to orchestrate next steps for a change. Many patients do not realize however, that there is a critical decision to be made….
Who is going to do your surgery?
It is imperative that each one of us musters up the energy and mental clarity required to find an expert surgeon. If you don’t have it in you, find a trusted relative or friend who can help. Many patients are not aware that they have a choice. One does not necessarily have to use the surgeon recommended by a general practitioner or endocrine specialist. Consider asking the referring doctor and check with your insurance provider as well, to help determine what are your surgical options.
WHO IS CONSIDERED AN EXPERT?
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. This demonstrates to a council, the surgeon’s high volume and dedication to the field of endocrine surgery and their commitment to attending regular scientific conferences in order to keep current with the latest research and techniques in endocrine surgery.
We were dumbfounded when we did our research to discover the shocking differences in surgical methods. One presumes that all surgeons perform the surgery in the very same way, but nothing could be further from the truth. Surgical methods vary greatly depending upon the experience and/or predilection of the surgeon. Therefore, 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 the surgeon (s) you speak to. It is important for each person to take into consideration their own personal health history as they develop their list of questions.
The best place to get answers to your important questions of course, is from the surgeon(s) you are considering. We suggest going directly to the source, rather than believing what others may tell you.
WHEN SELECTING A SURGEON….
- Does the surgeon specialize in parathryoidectomies?
- Is the surgeon a member of American Association of Endocrine Surgeons?
- How many years has the surgeon been performing parathyroidectomies?
- How many does the surgeon perform daily/weekly/monthly?
- What other types of surgeries does the surgeon perform, in the event complications arise?
- 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?
- What other methods, if any do they use to help ensure success?
- What is the surgeon’s success rate?
- What complications may possibly arise?
FOLLOW UP MATTERS!
- 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?
Once you have researched and have all of your questions answered to your satisfaction, you will hopefully then, be able to move forward with confidence that you made an educated decision and one that is right for you.