Tuesday, August 15, 2017

Choosing a BLA surgeon

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.

Even Medscape posted a study in early 2017 about How do patients choose surgeons (51% based on who accepts the insurance!). Perhaps we need to be considering other things, 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! Information 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?

{many doctors have been trained one way, 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 retroperitoneal approach. I didn't suffer from much pain post op. I could move around easily because my body didn't bend and affect those surgical incisions. I know many people who have had their adrenal glands removed from the front. They experience a reasonable amount of pain and discomfort, but they are ok. They survive. Here is one 2012 article I found about retroperitoneal BLAs}

-- 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?

-- 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 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 to 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! 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.}

-- How often do you see patients after BLA for rest tissue after BLA?

-- Incidence of Nelson's of patients (med lit says 20%)

-- Have you had any of your patients get sepsis? die 30 days after BLA?

-- How much hydrocortisone is administered peri-operatively?
{100 mg solu cortef via IV push. You want all of that all at once, not drip drip drip via IV over a few hours}

-- When are cortisol levels checked post op in hospital?

-- How long do patients stay in the hospital?

-- Do the nurses that care for me post-op have special training on adrenal insufficiency?

-- How often will you come visit me in the hospital? Daily?
{I want to see you every day!}

-- 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 is measured in the blood test as cortisol and dexamethasone isn't.}