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.
BECOME EDUCATED.
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….
EXPERIENCE MATTERS!
- 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 ?
SUCCESS MATTERS!
- 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.
PARAthyroid PEEPS 
I need some help! I am scheduled for surgery next week to remove my parathyroid. My concern is I had an ultrasound done and cysts were found in my thyroid on both sides and the surgeon has said she will not remove them because they are posing no issues at this time. I have been so I’ll for so long with this condition and had to quit my job because I couldn’t function. Is this normal with the thyroid?
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Dear Carla,
Thank you for contacting us. We are not medical professionals so are unable to answer your question directly or in any great detail. What we have heard however is that thyroid nodules and cysts are quite common and do not always need to be removed. If they are removed during a parathyroidectomy it is done at the surgeon’s discretion. From what you wrote however, it sounds like she believes you have healthy thyroid function. You might consider asking your surgeon what she is basing that decision on. Here is a link that you have probably already discovered from the Mayo Clinic, but are providing in any case. They talk about various growths (nodules/cysts etc.) and whether removal is deemed necessary. If you continue to have concerns you might consider getting a second opinion. We wish you all the best with your upcoming surgery to remove your parathyroid adenoma!
http://www.mayoclinic.org/diseases-conditions/thyroid-nodules/basics/causes/con-20021546
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Thank you for answering. I wasn’t sure if it was an after effect of the parathyroid or not. As of this date my thyroid is working properly. My next question is do many get their hair loss back after their surgery? I have had severe hair loss due to the long time it took to get a correct diagnosis.
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One of us experienced hair loss as a result of pHPT and it improved following surgery. However, it has also been our experience that other health conditions, that perhaps were masked by the overriding symptoms of hyperparathyroid disease, needed to be addressed following surgery. For one of us that included gluten sensitivity, for another thyroid dysfunction. Each person has experiences after surgery that are unique to them, so it is difficult to say what happens to one person will happen to another. The overriding experience though was a vast improvement to our health! Surgery is the cure for primary hyperparathyroid disease!
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Thank you again for your comments. My surgery is finally scheduled for next Friday. I have never looked forward to a surgery so much before! I want my old life back! How difficult is the recovery from the surgery? My surgeon explained that my body will immediately recognize that the calcium is gone and because my levels have been above 11.0 for more than a year that I would go through almost like DT’s and would feel horrible after the surgery until they can get my levels back to normal. This scares me! I feel so bad now what will it be like immediately after the surgery. What was your experience immediately after?
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Recovery after surgery is different for every patient of course. As surgical techniques vary dramatically based on a surgeon’s experience and techniques, surgery can last several hours or can be performed in less than a 1/2 hour. It would seem that this would play a role in a patients recovery experience.
We all went to the Norman Parathyroid Center (www.parathyroid.com) for our surgeries so ours were performed in 21 minutes or less. Even so, we each had our own unique experience, though none of us became hypocalcemic. This is when calcium levels drop dramatically after surgery. It takes time for the healthy parathyroids to “wake up” to regulate calcium. Our surgeon prescribed calcium supplements to prevent this from occurring. As we understand it, some others do not.
The questions you are asking us should really be asked of your surgeon for the reasons above, as our experiences will not necessarily reflect yours.
We wish you all the best with your upcoming surgery!
All our best,
PARAthryoid PEEPS
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