⁉️ Myth: After a “cure” for Cushing’s, everyone heals and goes back to normal.

Myth: After a “cure” for Cushing’s, everyone heals and goes back to normal. All Cushing’s patients can easily heal with no repercussions after Cushing’s. After pituitary surgery or a Bilateral Adrenalectomy (BLA), life is great and being “cured” means having a “normal” life! After all, surgery is a “cure” and about 6 weeks later, you are back to normal. “Say, you had surgery XYZ long ago! Shouldn’t you be better by now?!!!!”

myth-busted

Fact: I can not even tell you how many people asked me “aren’t you better yet?!” after both of my surgeries! There are too many to count! There is a misperception that surgery means a cure and therefore, healing should happen magically and quickly. No! No! No! This is far from the truth.

The sad reality is that even some medical doctors buy into this myth and expect quick healing in their patients. However, they are not living in their patients bodies nor have they obviously read the extensive research on this. Research has shown that the healing process after surgery is a long and extensive one. One endocrinologist, expert from Northwestern, even referred to the first year after pituitary surgery for patients as “the year from hell”! He literally quoted that on a slide presentation.

It takes at least one year after pituitary surgery, for instance, to even manage hormones effectively. Surgery is invasive and hard. However, the hardest part comes AFTER surgery. This is when the body is compensating for all of the years of hormonal dysregulation and the patient is trying to get his/her levels back to normal.

There is a higher rate of recurrence of Cushing’s then we once thought. This means that after a patient has achieved remission from this illness, it is likely to come back. In these cases, a patient faces other treatments that may include radiation, the same type of surgery, or an alternative surgery.

For many pituitary patients who experience multiple recurrences, the last resort is to attack the source by removing both adrenal glands. This procedure is known as a Bilateral Adrenalectomy or BLA. In these cases, it is said that the patient “trades one disease for another”, now becoming adrenally insufficient and having Addison’s Disease. Both Pituitary and Adrenal patients are faced with a lifetime of either Secondary or Primary Adrenal Insufficiency.

Adrenal Insufficiency is also life threatening and adrenal crises can potentially lead to death. Additionally, research says that BLA patients take, on average, 3-5 years for their bodies to readjust and get anywhere near “normal”. Most patients will tell you that they never feel “normal” again!

Think of these facts the next time you feel tempted to ask your friend, family, or loved one, “why is it taking so long to get better after surgery?”. Remember that in addition to the aforementioned points; problems from Cushing’s can linger for years after surgery! One Cushing’s patient stated, “I’m 5 years post-op and I STILL have problems!” This mirrors the sentiments of many of us in the Cushing’s community. Please be conscious of this when supporting your loved one after treatment.

You can find more information in the following links:

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2265.2011.04124.x/abstract;jsessionid=CC58CF32990A60593028F4173902EC47.f03t03?deniedAccessCustomisedMessage&userIsAuthenticated=false

http://press.endocrine.org/doi/abs/10.1210/jc.2013-1470

http://press.endocrine.org/doi/abs/10.1210/jc.2012-2893

 

Written by Dr. Karen Thames of  Empowering People with Invisible Chronic Illness – The EPIC Foundation

2 thoughts on “⁉️ Myth: After a “cure” for Cushing’s, everyone heals and goes back to normal.

  1. Hi my name is Shagufta and I have had Cushings Disease for over 16 years ..Post surgery and still suffering since surgery in 2004/2005.. I was diagnosed in 2004 after suffering and running back and forth to the doctors for over 10 years .. I think my symptoms started in 1990 when I had an early menopause at 24 years old.. I had benign tumour in the Pitituary gland .. Had Pitituary surgery 3 times 2004/2005 before it was successful.. After surgery had traumatic time went into severe depression then diagnosed with high blood pressure and oesoarhiritis.. Severe headaches and mood swings .. Still suffering then had reaccurrance in 2008.. Wasn’t willing to go for surgery again as had a traumatic experience before.. Then had gamma knife radiation in 2008 .. Still suffering with symptoms.. This year symptoms are severe again with headaches and severe weight gain around stomach.. Severe pain in legs and body can’t have normal life .. Doctors said not come back but why am I still suffering.. Need desperately help as feel like not living.. What am I supposed to do

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  2. Wow, Shagufta – what an awful experience you’ve gone through 😦 I don’t know where you are but it sounds like you need a new doctor and quickly!

    If this was my circumstance, I would look into having my adrenal glands removed. A BLA (bilateral adrenalectomy) will stop the cortisol production in your pituitary gland.

    I know some of my Cushing’s friends who have gone this route think it’s the best thing that they have done.

    In one bio (http://www.cushings-info.com/index.php?title=Personal_Stories_-_Staticnrg) she says: Are there any “cons”? No, not in my book. I wouldn’t trade my BLA for anything! Sure, I have to take medication every day to live, but I get to control how much “cortisol” my body gets instead of it controlling me. I have been fortunate and haven’t had a crisis at all. I haven’t had one visit to the emergency department anywhere. Sure, infections throw me into insufficiency pretty quickly, but the high side of that is I know I have an infection way before most folks would.

    They say a picture is worth a thousand words. I’m going to let these pictures say the rest for me about the cyclic nature of my Cushing’s Disease and how long I had it:

    Don’t I look like a grandma in that last one??? 😉 I don’t know what I was thinking with some of those hair styles.

    ~~~

    On our message boards, we have a whole area to talk about this surgery at https://cushings.invisionzone.com/forum/70-adrenal-bla-bilateral-adrenal/

    Best of luck to you!

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