(Updated September 5, 2018)
How do you choose a BLA surgeon? What do you need them to say that will prove to you that will get every last one of those adrenal cells out of your body when they do your BLA? I share the questions I asked my BLA surgeon three years ago.
The internet is loaded with articles about how to choose a surgeon. Consumer Reports gives its suggestions. So does Forbes.
The internet is loaded with articles about how to choose a surgeon. Consumer Reports gives its suggestions. So does Forbes.
Even Medscape posted a study in early 2017 about How do patients choose surgeons (51% based on who accepts the insurance!). It also seems that Cushies have surgery with whoever their endocrinologists work with regularly and recommends, often describing those surgeons as "the best around."
I would argue that we need to be considering other things as well -- more medically-specific issues.
I would argue that we need to be considering other things as well -- more medically-specific issues.
When the time comes for bilateral adrenalectomy or BLA, a Cushie has to choose the right surgeon. A google search didn't turn up much other than basic information from medical universities about Cushing's and BLA as a treatment. I did find this 2016 article Adrenalectomy for Cushing’s syndrome: do’s and don’ts, but doesn't help us when interviewing a BLA surgeon. The article tells us more when BLA is the best treatment, which is not what we are seeking.
I share so much information here in my little corner of the internet because the patient experience after BLA is nearly non-existent online. When Cushies search for information, I want them to find it. So I just post the list myself. My friends in the BLA group always help me learn more about this disease, so some of the knowledge I share here is as a result of learning from them.
I asked my BLA surgeon these questions in 2013. Yes, I asked all of these! Access to Information before making a decision is my right as a patient, and no surgeon is cutting into me without a thorough but friendly interrogation.
-- How do you reach the adrenal glands? Which operative method do you use to perform BLAs: posterior retroperitonial laparoscopic approach or anterior laparoscopic approach? What are the benefits and risks of each method?
Retroperitoneal refers to a posterior or back approach, while anterior refers to a front or side flank approach. The posterior approach allows for direct access to your kidneys and adrenal glands. The traditional anterior surgical approach requires incisions in your abdomen and requires surgeons to work around your liver, spleen, pancreas and colon.
I had my BLA done via posterior approach. Here is one 2012 article I found about retroperitoneal BLAs. I did not suffer much pain pain post op so I didn't take many pain killers. I could move around easily because our bodies bend forward, not backwards, in our daily lives. I know many people who have had their adrenal glands removed from the front or side. They experience a reasonable amount of pain and discomfort from the abdominal surgery, but they manage with cautious moving and pain killers. They survive and would do it again.JUST REMEMBER: Many doctors have been trained to perform BLAs either using the posterior or anterior approach, and they like to do it that way. Let them. You don't want them practicing on you. If you prefer one method, then find a surgeon that specializes in that method.
I had my BLA done via posterior approach. Here is one 2012 article I found about retroperitoneal BLAs. I did not suffer much pain pain post op so I didn't take many pain killers. I could move around easily because our bodies bend forward, not backwards, in our daily lives. I know many people who have had their adrenal glands removed from the front or side. They experience a reasonable amount of pain and discomfort from the abdominal surgery, but they manage with cautious moving and pain killers. They survive and would do it again.JUST REMEMBER: Many doctors have been trained to perform BLAs either using the posterior or anterior approach, and they like to do it that way. Let them. You don't want them practicing on you. If you prefer one method, then find a surgeon that specializes in that method.
-- How often and under what circumstances have you converted from a laparoscopic approach to an open BLA?
-- How many BLA procedures do you perform each year?
A Cushie friend P asked me who performs adrenalectomies. Answer: general surgeons or bariatric surgeons. This 2009 article entitled Which matters more: volume or specialty? reviews the outcomes of over 3,000 surgeries performed by nephrologists and general surgeons throughout the United States It is recommended to go with the surgeon that does a high volume of these surgeries for a better outcome.
-- Will you perform the surgery or do you have anyone else assist you?
I prefer you to do it. I do not give consent for a resident or fellow to participate in my surgery.
-- Will a robot assist in my surgery?
This is a real thing. You better ask. Then click here to see how many adrenalectomies are listed under the 'robot' column.
-- Will a robot assist in my surgery?
This is a real thing. You better ask. Then click here to see how many adrenalectomies are listed under the 'robot' column.
-- Will my weight cause any surgical concern?
-- How much exploration will you do to search for ectopic adrenal tissue?
Give permission and encourage surgeon to really explore the area. Causes for persistence or recurrence of endogenous cortisol production were incomplete removal of the adrenal glands and ectopic adrenal tissue, which could be identified in locations like the retroperitoneal fat, the gonads, or the mediastinum.
-- How do you handle the adrenal gland once detached? Do you bag the adrenal?
My surgeon said he doesn't cut into the adrenals. He cuts them away from the blood vessels, bags it, removes it, and sends it to pathology. This keeps him from leaving any adrenal cells behind.
-- How do you ensure that you remove even microscopic adrenal cells? Do you scrape the adrenal beds?
I drilled my surgeons about rest tissue and making sure they got the fat surrounding the adrenals. How does he/she make sure all adrenal tissue is gone, out of hiding. You want them to remove all the surrounding fat. My left adrenal slid south below the kidney!! My surgeon said it was a "normal" congenital defect"--that's an oxymoron! Your surgeon needs to explore and track it down.
-- The adrenal glands are fed by many vessels and nerves. How do you navigate around these to avoid damage to the kidneys and other structures?
The arteries supplying the suprarenal glands are numerous and of comparatively large size; they are derived from the aorta, the inferior phrenic, and the renal. They subdivide into minute branches previous to entering the cortical part of the gland, where they break up into capillaries which end in the venous plexus of the medullary portion.
The arteries supplying the suprarenal glands are numerous and of comparatively large size; they are derived from the aorta, the inferior phrenic, and the renal. They subdivide into minute branches previous to entering the cortical part of the gland, where they break up into capillaries which end in the venous plexus of the medullary portion.
-- Incidence of rest tissue or remnant tissue after you perform BLAs?
informal study from BLA group of 550 post-op BLA patients suggest < 10%
-- Incidence of Nelson's of patients (med lit says 20%)
informal study from BLA group of 550 post-op BLA patients suggest < 10%
-- How much hydrocortisone is administered before the surgery and during the surgery?
100 mg Solu Cortef via IV push at both, or before and after. You want all of that all at once, not drip drip drip via IV over a few hours. Anesthesiology team needs to watch for low blood pressure during surgery, as this is a sign of adrenal crisis. Be sure to discuss this with surgeon in the office, anesthesiologist before surgery, and surgeon before surgery at bedside. It is always a good idea to ensure everyone is on the same page (even if we are the ones who really should be getting this reassurance).
-- How long do patients stay in the hospital?
-- Do the nurses that care for me post-op have special training on adrenal insufficiency?
-- When will you come visit me in the hospital? Daily?
-- When will you come visit me in the hospital? Daily?
I want to see you every day!
-- When are cortisol levels checked post op in hospital?
-- How will we assess the success of the surgery with lab work?
DHEA-S is a good measure to check since this is made in the adrenals only. After both adrenal glands are removed, the blood cortisol level can be measured to see if the operation was successful if the patient is not taking hydrocortisone. In this circumstance, the patient should be given dexamethasone for several days before blood work since hydrocortisone can be measured in the blood test as cortisol and dexamethasone cannot. Most adrenal surgeons don't even worry about dropping cortisol and instead send the patient for post op labs/ blood tests for DHEA-S, comprehensive metabolic panel (CMP), and complete blood count (CBC) between days 5 and 10. That DHEA-S level should be very low. Mine was less than 0.1. My endocrinologist Dr. Friedman said that was a ZERO.
-- Who will write the orders for my hydrocortisone while I am in the hospital?
This is likely the most important question here.
* Endo should give you prescriptions for HC 5mg, HC 20mg, and solu-cortef actovial 100 mg *before* BLA so you can get them filled and ready at your home for after surgery.
* Surgeon will order steroids for your hospital visit but may not dose you high enough to prepare the body for the plummeting cortisol we face. Some only get 20 mg HC a day the first day post op, which is not accceptable. We need at least 60 mg HC to allow our body time to stabilize and heal from the trauma of having our bodies cut open and organs removed.
* I proposed a post op cortisol replacement plan to my endo (Dr Friedman) at my pre-surgery appointment. At first, he said he was reluctant to give my surgeon any in-hospital cortisol replacement guidelines. He felt it would be stepping on "toes." I confirmed at my pre-op surgeon appointment that the surgeon's toes would be fine. He would do as Dr F and I worked out. After my pre-op appointment, I emailed Dr F the amount, times, and day post for his confirmation. I then replied to Dr F's reply and added the BLA surgeon.
I don't mess around, folks. That's how I had a sweet ride on a cortisol high (not really, just enough) for a few weeks to let my body heal. HEAL THYSELF!
I don't mess around, folks. That's how I had a sweet ride on a cortisol high (not really, just enough) for a few weeks to let my body heal. HEAL THYSELF!
-- How do I contact you if I am having trouble post op?
The doctor may say just tell the hospital nurse, and that nurse will contact his/her office. That's all good except that most nurses are very hesitant to bother a doctor with all of the patient's questions. READ THAT SENTENCE AGAIN. Most nurses are very hesitant to bother a doctor with all of the patient's questions, as many have been screamed at or reprimanded in the past.
For Cushies, we need direct access to the surgeon and endocrinologist.
-- I have called the surgeon on my cell phone when the nurse wouldn't call after repeated requests.
-- I have called the surgeon when the doc's fellows pay a visit and try to do something other than what the surgeon and I worked out at my pre-op appt.
Don't be afraid to raise a stink and get the assistence or information you need. The folks there won't like it, but what can they do?! No... you will be out of there soon, so be sure you get what you went there for.
-- Under what circumstances should I seek emergency help after I leave the hospital?
The surgeon may say things like fever over 102 degrees, oozing wounds, extreme pain or redness at the incision sites, etc. Doctor should give you a number for how to reach him in an emergency
-- When will my pathology report be back?
-- How often will I see you for post op appointments?
-- Have you had any of your patients get sepsis or die 30 days after BLA?
-- Would you be so kind to take a photo with me?
"Since you are going to send this Cushing's in remission, this will be one of my before photos. I want to have a nice souvenir to remember us."
The surgeon may say things like fever over 102 degrees, oozing wounds, extreme pain or redness at the incision sites, etc. Doctor should give you a number for how to reach him in an emergency
-- When will my pathology report be back?
-- How often will I see you for post op appointments?
-- Have you had any of your patients get sepsis or die 30 days after BLA?
-- Would you be so kind to take a photo with me?
"Since you are going to send this Cushing's in remission, this will be one of my before photos. I want to have a nice souvenir to remember us."
