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

[~MaryO~]

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?!!!!"

 

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

 

This is another article that validates the aforementioned fact about the "cure myth": http://home.comcast.net/~staticnrg/Cushing's/resmini%20Cushing's%20article-2.pdf

[betseebee]

Thanks for posting this Mary. As someone who has had three surgeries for Cushing's--2 pituitary surgeries and one adrenal removed--and still doesn't feel back to normal, I can attest to how difficult it can be to deal with friends and family. I find them offering exercise and dietary "advice"--which they seem to think is the cure for everything. If you are like most patients with Cushing's or who have had Cushing's, you have already gone on every diet under the sun and tried many holistic treatments--only to find that they don't help. Who among us hasn't also heard "Oh, you just need to be more positive." People simply cannot accept that this is an illness that can have life-long repercussions.

[3v3]

Yes, and the worst offenders are my doctors. I am different after my adrenalectomy (uni), and certainly the 40 lb weight loss and lower BP is good, but not 100% better. Still cannot work...

[~MaryO~]

My husband was one of those "think positive" people while I was being diagnosed.  The doctor said I didn't have Cushing's, therefore I didn't and I could make myself better.  He was sure it was all in my mind (as opposed to all in my head!) and he told me to just think "happy thoughts" and it would all go away.

 

It wasn't until we were talking about surgery and he asked my (former!) endo if he would recommend this surgery to his wife.  When the endo said that he didn't care, he was divorcing her and didn't care if she died, my DH became a believer and I knew it was time for a new endo.